Here I am over two weeks out of stem cell surgery after being so unsure for seemingly a very long time if I would make it all the way to the OR. I did and I’m so grateful! Yes, I still have ALS but I feel like a warrior that was slipped an extra weapon that my comrades don’t have access to. I don’t know how to express it really, it’s just something I wish we all had as an option right now. I can’t say with official data whether or not I’ll live longer, but I have this feeling I can’t shake. The only thing I know to compare it to is some type of survivor’s guilt. I ask myself a lot, “How did I end up with this opportunity so many want to be a part of? Others surely deserve it more than me.” The truth I know is we all deserve anything out there that has a chance against ALS. That includes me. I tell myself to stop feeling and thinking in such a way. I’m getting there.
I’ve had incredible support in this time from complete strangers, my entire family, friends, my study team and my ever-loving, always there, husband and caregiver. Grateful as I am and tough as I like to think I am, it has been painful. I’m improving daily though. The real tough pain is for the most part over as long as I don’t overdo it.
I went To Emory this past week to have the stitches removed. The last few days of having them in felt more like barbed wire in my head. It hurt during the day and itched like crazy at night. It feels so much better having them out. I can put a bit more into range of motion excercise without the tight skin feeling in the way now. From the beginning, I don’t know why and it’s not a concern now, I had less pain and faster range moving my head to the right, the left is now catching up. Moving my head up and down is coming along too. The most painful and frustrating is trying to move my body from the waist down and back up. That’s still a tough and painful movement. The frustration comes in, for example, dropping something on the floor from my chair. It’s a sight trying to pick it up. My old cane has come in handy but I do often have to give in and ask for help. The great news is that it’s becoming less painful with each passing day.
Like almost all of us, since diagnosis I started scouring the internet right away for any type of possible treatment available. I mean anything from something a person was trying on their own to the FDA approved studies be it medication or surgery. Stem cells have always been the top of my list as holding the most promise. Especially the particular stem cells and type of delivery into the body being used. Injection directly into spinal cord that Neuralstem has been working on and completed a phase 1 safety trial already. That has been my number one choice. Now, that is what I am able to be a part of in phase II. My main focus in life regarding ALS is doing everything My Doctor and whole study team tells me. After having the surgery, it is still my number one choice and I believe holds what we all need. I would take the risk again tomorrow without a hint of hesitation. I don’t have hard data to give. There is already great information out there for people to learn about it. I can give you my opinion, my personal belief. This is where it’s at in eventually getting to the long awaited treatment and dare I say cure. A lot of hard work and dedication has gone into this for years to get where it is. I believe It’s on an unstoppable path to success. I hope for us all it reaches a level of available treatment soon as possible and just as quickly for spinal injury and other neuro-degenerative diseases.
We’ve seen some disappointing studies over last couple of years that seemed to have promise only to be suddenly dropped to the devastation of some patients saying they felt benefit. Heartbreaking. I still believe people who felt they were benefitting in any way should have had the option to continue. There are other trials going on that may hold some promise, even other stem cell options. So my intent is not to say to people I have the only thing out there worth being a part of. We need to keep trying all things and keep hope alive. Anything that gives any improvement or halts progresssion whatsoever is a great advancement for us. Hope, dedication and determination from pALS, researchers as well as proper timely approval from the FDA and we will get this. My little message that most of us are already living by. Hope and never ever giving up!
I could keep going about my serious feelings on this. I will have much more about my experience and opinions in future posts.
I want to get a little into the fact that I’m still a woman and right now I have a very unflattering haircut that I don’t expect to catch on. My hair is long (past shoulder length) in front and sides and I have a military buzz style in the back from surgery. It could possibly be referred to as some form of a backward type of mullet. No, that’s not what I want. So I’m trying to decide what to do about this little situation. With lots of thought I’m pretty sure I’m going to cut quite a bit of length off while having it shorter in back and the front framing my face. I’ve also become quiet a little hat person. I never was so much when younger. Now I feel they’re a great accessory and the right style even helps reduce the look of my fatter face. I may be wrong but believing it makes me feel better. This will also make my hair easier to care for. Something my husband helps with. Can’t go wrong there.
I see this has turned out quite long very fast so I think I’ll wrap it up. even though I have much more to say. Things about the study, My new medication routine and side effects it came with and just other ramblings about myself. Having had time to heal from the hardest part of recovery has me now feeling up to writing more. The surgery wasn’t the end of the study at all and that is my number one priority. I do hope to write weekly. It may be sometimes more or less. I will continue to give updates on the study that are my experiences and personal opinion.
I’ll end with saying I feel extremely positive about being in this study and what I believe it holds for our future..
Thanks for reading.
Until next time, take care,