I am still doing the things mentioned in previous posts. The main thing that has changed for me is using a wheelchair when I need to go distances that I used to be able to walk a year or so ago along with a lot of wall touching and using Steven for security.
I still LOVE my Segway hover board with a handle (handle sold separately), but I can't take it everywhere. I also found that using one leg (as opposed to both) to pedal my Alinker (walk training tricycle thingy) is doable, so when it gets warmer, I will be taking it out for a spin. I did replace and reposition the seat of this contraption.
I mentioned previously that I am not a big fan of the EDSS Scale (measure MS disability), but to put a number on how much I have declined, I went from a 3.5 - 4.0 in 2018 to a 6.0 - 6.5 today (2020). This scale only goes to 10, which is death due to MS.
Get HSCT Now!!!
Per my previous post, I still totally recommend HSCT. I wish when I first inquired about it in 2012 and again in 2015 (when I had active lesions [NOT a requirement to have HSCT, but better success rates]) that someone would have told me how important is was for me to have this treatment as soon as possible and that if I was continuing to get worse with my walking ability year-after-year, it was very likely continue to get worse year-after-year. Clearly, 2018 was too late for me for HSCT.
Bonus: I have few more months before I may officially declare I am in menopause and thankfully, it's symptomless!
Ampyra/Fampyra
Do not let my determination (or pictures) fool you into thinking things are better than what I am saying. Ampyra/Fampyra is the pretty much the ONLY reason I am still walking.
During the months of October and November 2019 before I started taking Ampyra/Fampyra, I could barely walk and was coming home every night from work wondering why I was doing this (walking) to myself and being exasperated, frustrated, and upset. I called my number one support HERO, Steven, my husband, from the pharmacy when I got my first month's supply of the generic form of the drug so I would not cry because I didn't think I could make the walk from the front of the store to the back counter where the pharmacy is. That night I declared I would no longer be running any errands by myself. I am EXTREMELY lucky the drug worked instantly. I'm about 25% better and holding steady at least for now and still run some errands by myself.
Speaking of Ampyra/Fampyra, I have, thus far, been unable to get it covered through Blue Cross Blue Shield of Texas. I paid $595 out of pocket for my first month's supply of the generic form of the drug because I was so desperate for help urgently and I knew from the past this drug works for me (I had a free trial in 2018 and that was my first experience with BCBSTX not covering it for me, so I stopped). I am working with my neurologist to get this drug covered. In the meantime, a friend got me five boxes (28 day supply per box) from another country. I paid $100 per box of the name brand from outside the country vs the $3,000 per box in the United States.
Emsculpt
I mentioned I was doing Emsculpt (muscle building) back in June/July 2019 to strengthen my muscles and supplement the work I do in the gym every week. After arranging a deal with the owner of the place where I receive Emsculpt treatments, I financed (I am spending more money than I have to be at war with MS) 30 sessions where I choose which body part I would like to build muscle. I am working on five parts (abdominals, hips, and quadriceps mainly and occasionally my hamstrings and glutes). I have to create my own protocol and plan because there are no studies on this treatment and MS. I noticed these treatments are starting to help. A week or so after completing three weekly treatments (recently) on my hips (trying to target multiple hip muscles including the psoas), I started being able to go up the stairs without holding the railing (I do bounce around the narrow stairwell I use for stair climbing like a pinball at times due to balance issues, though.). I have not been able to do that since the beginning of 2019. This treatment is not permanent, unfortunately, so I'm not sure what I will do after the 30 sessions are completed.
Working Out and The MS Gym
Many have urged me to join the The MS Gym, so per my previous post, I did. What I learned is The MS Gym is FABULOUS and if I had not started working out regularly almost six years ago, I would have found it to be the most helpful place for me to be. Luckily, I have been on the right path this whole time, so while I did join, I am continuing on my own with my trainer and the workouts he designs for me. I have NOT reduced the amount of working out I do no matter what is going on with me. Exercise may not have stopped the disability brought on by the disease, but I believe it's helped a ton (along with having a great vitamin regime).
Side Note
The physical rehab I did at Brooks Rehabilitation had some lasting positive effects on my gait, so I may be open to another Brooks Rehabilitation stint in my future. Previously, I said I would not have gone for this type of therapy if I knew I was getting worse, but I really believe in neuroplasticity, so trying again is within the realm of possibility.
Damage Versus Disease Activity and Diet
These are my personal thoughts on MS diets. Diets do not repair permanent damage as far as I have seen and read (I think Keto may claim it does.). Diets are fantastic for people who...
- Have Relapsing Remitting Multiple Sclerosis (RRMS) and want to stop relapsing/disease symptoms
- Are living with progressive MS who have symptoms being caused by inflammation (not trying to correct permanent damage)
- Need to eat much cleaner than they currently do
- Are trying to keep inflammation down in the body in general
Progressive MS is a different story. I along with many others who have a progressive form of this disease who already ate healthy and then tried an MS specific diet for a long time did not receive any benefit in the way of undoing physical damage.
I do consider the gut and what you put in it of the utmost importance when it comes to overall good health, but I have not seen any proof that diets alone undo permanent damage caused by MS.
Hair!!!
Hair at 13 Months Post HSCT
Hair at 14 Months Post HSCT
Hair Combed Out Between 14 and 15 Months Post
Hair at 15 Months Post HSCT
