These last months have been unreal, amazing, and as always, challenging. I could write a full blog about the challenging parts, brutal days, symptoms overload, mental aspects and emotional impacts of all that, so I’ll just leave it at that for now and move on….
For those people who aren’t close enough to me to understand my struggles, I made a video below called Reality Check. I did it to try explain what life is like between the smiley videos I make of my brilliant moments of new functionality. Please understand that my videos are tiny clips of awesomeness that happen once in a two or four week period.
Yes I have developed the ability to walk 50 solid steps without a walker, but that doesn’t mean I can walk again that day, or the next, and definitely not all day, even with a walker or with rests.
I have a FINITE NUMBER OF STEPS per day (or output) that I can do. It’s hard even for pwMS to understand what my disabilities are, as they are very unusual.
My mobility disabilities are ENDURANCE in origin. My daily steps can be depleted even further if I use my brain or other parts of my body for something else. I can’t just take a nap and be back to baseline. Even I don’t know what my maximum is on any given day. On to the good parts…
I am SO much happier here in Oregon. I feel like I have been LIVING for the first time in 9 years. I also don’t feel like the Poltergeist is trying to kill me, which is a huge relief, but an odd sensation at the same time. It’s like a toxic best friend that moved countries? I know it’s still in me, lurking silently, but giving me peace for now.
As I’ve previously written, the longest I’ve walked (in years) all in one stint was 150m in April. That was for my MS Neurologist, Dr. Traboulsee. Until yesterday I had not attempted to walk that far. Mostly because I didn’t think I could, but I was also scared that I would push too hard and it would set me back weeks.
Yesterday I just had the feeling that it was the day to try to go farther. With multiple calculations on step size, count, distance, etc., I did a walk outside nonstop, with no walker for 475 steps which equated to 300m!
That is the single longest walk I have ever done in so long I don’t even remember. I balled my eyes out right there on the street. Yup, it was a full on drama scene. I made a short video of it to capture the emotion of the moment, but I look almost more devastated than happy, so I am not sure I will share it.
With this new distance, it potentially drops my EDSS to 5.0, from 5.5. Click here for more info on EDSS and MS. Of course nothing is official unless you do it in front of your doctor. I can’t believe it. Don’t ask me to try it again. OK, maybe in 4 months or so….;-)
I’ve already mentioned that I’ve been driving regularly now, which is outstanding. The bigger deal was that one day my scooter battery was dead, and I needed ginger ale badly as I was ill. I had no other option except to walk in to a Quickie Mart to get the ginger ale. It was really tough: I staggered and I was scared out of my mind I’d fall, etc., but I did it. I got that ginger ale! I realized it was the first time in maybe 7-8 years that I bought something for myself, on my own two feet. On my own two feet. I just had to say that again 😉
For an able bodied person, this is taken for granted, and it should be for everyone frankly. For me, I went into a shock like state realizing the depth of what I’d been missing all these years. I couldn’t cry, I couldn’t laugh and I had no one to share this moment with so I kept it to myself, till now. Like WOW! Who would ever think that buying ginger ale would be a monumental triumph.
Lastly, a little teaser for my next blog which will be coming shortly. I’ve been accepted into an extremely promising phase 2 clinical trial (overseen by FDA), which is out of Houston. I leave August 22nd to start the process! More to come….
Reality Check Day to Day Life Click Here for Video
Click Here for Walking Video 6 Months Post HSCT Video
Amazing, Jenny. No, none of us know what your daily life looks like.
We just see this brilliant, bubbly girl who won’t let MS hold her down. I know there’s a lot more going on, but I’m so excited to see you gain every little ounce of freedom from this horrible disease. Every step, every smile, every victory tear, it’s all incredible. I’m glad to be part of team Jenny. Cheering you on, one step at a time. It’s ok if there’s days that suck. I still have days that suck, too. Although, I’m sure it is not the same level of suckage. Is that even a word? 🤔 anywho, I know what we see is just a small sliver of your day and I’m glad you’ve allowed us that much.
I can’t wait to have you here! 🧡
Yes my friend, you have been with me every step of the way, and I can’t thank you enough! Suckage will be our new word, haha! Can’t wait to see you next week!! ♥️🌹😘
WoW 👌 👏 😍 👍 🥰 ☺️ 👌 👏
The video of you walking AND at that distance is heartwarming 💕 I am so happy your seeing these results and also happy that You Jenny, YOU have the mental strength to push the obstacles aside and believe in yourself. Science, technology is astounding yet we must work with those to get to where your doing. You and putting in the massive effort and work.
Believing in yourself is such a remarkable mindset given your multiple challenges we really know nothing about. It brings me joy to see you doing so well and HAPPY. But….. AUGUST 22ND ………EXCITING 💜
Wow Nicole thanks so much for your wonderful and thoughtful comments! It’s sure has been a tough road, but I am trying as hard as I can to get back a better quality of life. Having a little fun in there helps immensely! Sending ♥️ 😘
Jenny! You go girl! You’ve worked so hard and endured so much. I felt your triumph as you described the laborious but joyful trip to buy ginger ale. It is no small deed. Every feat of independence lifts us, it is what we want most. I admire you so much. Can’t wait to read more!
Aw thanks Kim! I know you know about having those little triumphs so well yourself, just to keep or gain back any independence that the disease steals endlessly. Much admiration back to you! ♥️
So much emotion here. Feeling you ! Xox
Thanks my friend ♥️ 😘
They say it’s a rollercoaster of recovery…!
Thank you for sharing your your reality & achievements. There is so much no one but the person living it understands or knows. Even sharing a small insight is so unbelievable brave and courageous, thank you. This makes you’re achievements even more remarkable. 👏🏼 I can relate to the independence feelings, go on you! You are doing great and it’s so fantastic to see you glow in your recovery. Not everyday is sunshine & rainbows and that’s ok. The very fact you continue is incredible. Be so very proud of yourself! 👏🏼😘
Aww Lauren, thank you for your very thoughtful comments 😘. I want to share the milestones (with hesitations sometimes as I fear they will disappear), yet there far more challenging and horrible days just to get there…for me anyways. It’s hard to keep a perspective unless being transparent of both sides. I am sure you can relate to the independence feelings. We dread any loss of that or potential loss of it in the future. I feel it like a black cloud that sits over head and takes energy to ensure it is cleared so that bright sun shines down, and doesn’t ruin the good moments. Thank you for reading and sharing, as always! Let me return the sentiments to you as well. Be so very proud of yourself too! 😘
Wow! That’s a miracle! The Hail Mary treatment was properly named. Mary never lets us down.
Thank you for sharing Jenny. I have only just found your blog and have spent the last couple of hours reading about your HSCT treatment and watching your walking videos. I’m so pleased to the improvements you have made. I too have heavy lesions in my C spine and walking is evoking more difficult. My right leg is OK, but I now have drop foot on my left side and this makes me very nervous about tripping. Is drop foot something that you experience as well as it doesn’t look like it from your walking videos?
Hi Michelle, thank you so much for your comment. I’m so sorry to hear your evolving disease process. It’s devastating to feel losses in our bodies. Yes I had a decent foot drop on my right foot at diagnosis that took about two years of rehabilitation to resolve. I used every possible angle/technique/technology to bring it back. It’s helpful using a walker if you don’t already (bad idea to trip and fall ;-). If you carefully watch my walking in the videos, you’ll see, at the beginning me swinging my right leg and then later, my right foot sticks out as opposed to being straight – evidence of previous damage. I hope this helps, and I wish you the best, especially if you’re considering, HSCT ♥️