Post Stem Cell Surgery – Pics & Video

Alright, another week post surgery and I’m feeling so much better than last week’s post. I have much more range of motion in my neck. Even if I do something that aggravates it, the pain is much less intense and only lasts a short time. It’s still a little difficult moving upper body forward and back but I can do it. I can also rest on my side and just move better in general. It’s great!

If I had to complain about something it would be this one scab on my neck that’s taking its time coming off. There is no sign of infection, we are still cleaning it twice a day and putting vitamin E oil on it. I could force it off and not have any problems but I know that could make it scar differently so I’m trying to be patient. I want it off also because it’s keeping me from getting my hair cut. I just don’t want to go in with a fresh scar and a scab. If roles were reversed, I wouldn’t be happy. I think other clients would be unhappy too if they saw it. So I wait.

I go back to Emory next week for more tests. My blood will be checked to make sure the immunosuppressant drugs I’m on post surgery are at the right levels. I’ll have another full MRI of my brain and spine. I’ll be glad when that’s completed. It’s a long one. Most future MRIs will be shorter because a smaller area will be scanned. There will be other testing and talking to closely monitor how I am doing. I feel positive about this and future appointments and outcomes.

I have told Dr. Glass and my study Coordinator, Jane, what I’ve noticed in myself. I have to keep in mind I’m still very early out of surgery and I don’t want to start saying things that I’m not absolutely positive about yet. I must tell you though, I do feel positive and I am experiencing positive changes. If I had every treatment option available laid out for my choice, even the power to switch it up a bit, I would with no hesitation choose exactly what I had. I would without hesitation choose to have stem cells injected directly into the gray matter of my spinal cord, and only the specific stem cells from Neuralstem, Inc. I also wouldn’t trade for anything my ALS specialist, Dr. Jonathan Glass, professor of neurology, Emory School of Medicine. He is director of Emory ALS Center and principal investigator of Emory clinical trial site. His dedication to finding a treatment and ultimately a cure for his patients is so apparent. I know I’m under the care of one of the best ALS researchers in the world. Neurosurgeon Nicholas Boulis performed my surgery and also developed the device to safely inject the stem cells into the spinal cord. Even though at least one other surgeon has used what he created and I’m sure there are many surgeons competent to use it, he created it and boldly went where no other surgeon had been before starting in the phase I trial. That helps a lot with the fear factor along with meeting and speaking with him prior to surgery. His casual confidence and extreme knowledge he so willingly, eagerly shares of any aspect of the procedure one can possibly think to ask, while at the same time not sending any signals of intimidation puts him as number one choice to perform my surgery. I received exactly what I would have chosen.  I’ll be forever thankful that I was chosen as a candidate for this and after meeting all criteria was able to be a part of what I believe is the beginning of great things ahead for ALS. I’ll be more specific with my outcome in time. I have no doubt it’s positive, I just want to give more time and make sure everything I claim is right. Stay tuned.

I had to give this some thought and decided to do it. My husband recorded me a little in the hospital on the third day. I would be interested in seeing what a person is like on day three after this procedure so I figured others would too. I’m not going to lie, my main hesitation is because I look awful and well, very fat. I know many people say they wouldn’t care, most will say I shouldn’t. It is how I feel. I’ve gained a lot of weight since being diagnosed with ALS. More than needed and I don’t like it. I’m not concerned with whether or not it should bother me. Fact: It does. In fairness I’m also still very swollen all over in the video. The swelling almost masks some of the facial muscle changes and hides the normally obvious atrophy seen mainly in my right arm and my fingers look more normal to me. There, I can be positive about how my looks have changed. I remember shortly after waking from surgery hearing family talk about how swollen I was and lifting my arms enough to see my very swollen hands, then my brain went off into the great Pink Floyd song, Comfortably Numb. The part about having a fever as a child and hands felt like two balloons. They did look like hospital gloves blown up to full capacity. Back to the topic, we all know I don’t like the way I look here. I’m putting that aside to give a glimpse of 3 days post surgery. I’m also showing pictures fresh out of surgery and a few more. I chose to put this out there for basically the same reason I put my daily pic on my website. I did that to spread awareness of ALS by showing the long-term progression of ALS. I always come to the conclusion raising awareness about ALS is much more important than how I look. I just allow myself a moment to whine about it here. It helps. I already feel much better. Now let’s get to spreading awareness! I hope this interests you as much as it would me.  I remember him recording, but it’s a vague memory. I’ll probably put the pictures and video somewhere on the website too for easier access as time passes. Here they are.

fresh out of surgery

Over Two Weeks Out of Stem Cell Surgery

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,

April

Stem Cell Surgery

I finally got the news I’ve been waiting for. All the months of testing, waiting and hoping that I’ve been posting about has resulted in a date set for stem cell surgery at the end of October.

Surgery for the Phase II, Open-label, Dose Escalation and Safety Study of Human Spinal Cord Derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis.

I’ll be having 4,000,000 stem cells injection directly into my spinal cord, 10 injections on each side totalling 20 injections. I’m experiencing many emotions about it. First I’m honored to have been chosen even though much of it was luck by being at the right stage of progression at the right time and living in the right place. I was still chosen and I take it very serious. I know this trial is being watched very closely and being healthy as possible for surgery and recovery is important to show this is worthy to continue for more people, hopefully sooner. While there will be observations for improvement or slowing of progression, this is still considered a safety trial. Although I have already started eating healthier, I’m definitely kicking that up a notch and doing everything possible to be physically and emotionally prepared for this surgery.

It’s my feeling that participating in this study is not only for me but for everyone living with ALS and those who love them. This is huge for ALS and also for other neurodegenerative diseases such as Parkinson’s and Alzheimer’s disease. A lot will be learned. That’s why I want everyone to know how serious I’m taking this. I want and need to do well for the advancement of treatment for us all. In saying that, I also want to say I can’t predict what will happen in the big picture or when. From all the reading I can get my hands on about this and my personal thoughts, I think this is making much progress in understanding ALS and even if I get no measurable benefit from it, I still believe it’s a huge advancement of learning for researchers and will move treatments forward much faster.

After saying all this, I have to admit to having moments of fear. Thankfully I’m able to express that and keep my mind in a good place. I’ve spent the last few months being tested to make sure I meet the strict criteria and that’s where my thoughts have been. Now that the surgery is actually scheduled, that is where my complete focus is.  There is no doubt huge risks are involved, including my lifelong fear of being instantly paralyzed from the neck down. While knowing these risks, I’m not in the least  deterred. During the procedure I know I will be under the care of what I believe to be the most skilled hands and brilliant minds in ALS research and that care will continue throughout my recovery. This helps keep my fears at bay. Recovery will be far from a cake walk but, I am prepared to take it on.

I want to say to the ALS/MND community as a whole that you can count on me to do everything expected and recommended by the doctors treating me and I’m dedicated to being in the best condition for it. I know many would love to participate in this study. Since it’s so limited at this time, I hope that will bring some comfort to know I’m not just glad to be a participant, I am dedicated and preparing for it. I know that would make me feel better.

Let’s keep hope alive that this and other studies going on will give us a treatment soon. For us as well as people living with other neurodegenerative diseases. Hope is alive and well in me for future treatment.

I have been nervous about this blog post since I received the news. After writing it I feel better and believe I will have the support of the ALS/MND community behind me. I still have a life to live until surgery and for the most part my life will continue as normal.  There are plans to be made for pets and family coming from long distance. Other than that, I’ll be listening to my music, watching movies, loving my pets and being me as each day passes.

Thank you very much for taking the time to read my blog.

Until next time, take care,

April

My Husband Takes ALS Deal 100% With Me

Hello everyone… It’s been longer than I’d like since I last wrote. I’ve had a whole lot of nothing going on. As I’ve mentioned, I’m in the phase II stem cell trial and that means I may or may not have the surgery to inject the stem cells. There has been a lot of tests and a lot of hurry up and wait. Going over the little I’ve just written makes me feel a sense of guilt. I have great support from family and Emory staff. I don’t mean to sound like I’m not grateful. I am so grateful to be where I am and I’m willing to do whatever it takes. I was surprised at learning the smallest thing can mean I’m out of the trial. I guess what I am is scared, nervous I’ll get that news. Any phone call could be the one saying I don’t meet the strict criteria. It’s amazing what all has to fall into place at just the right time to be on the table having these cells injected. Being in the trial is no guarantee I’ll have the surgery. I’ve also mentioned before, I like and feel a need to know what’s going on regarding me. I need to feel prepared. You just do not get that with this trial while going through all the testing. I understand and accept that. I also know it’s for a very good reason. In the big picture, this trial isn’t about just me, it’s about finding a cure or treatment for ALS. It may turn out I’m not one that will help move that forward with this specific trial. That is one thing I have been trying to prepare for in the event that is the case. I am feeling very positive about it though.

Between waiting for the next test result or the next test to undergo, I have been focusing on other things. I’ve escaped some in reading, I’ve organized closets. I’ve enjoyed some mild pampering, things I haven’t done near as much since my ALS diagnosis, like a manicure and waxing. I Had my first haircut in a year. I couldn’t believe it was that long ago. I haven’t been avoiding it, priorities and life in general have just changed. My hair is simple with straight long layers so it’s just grown. I did have it thinned out and it’s much easier to brush and dry. I kept most of my length.

Tony and I have talked about things we want to do. I’ve decided I want to hang glide tandem. Luckily I’m about 30 minutes from a great place that offers that. There are some places we both want to revisit together. places we haven’t been back to in years.

This travel talk brings me to what Tony did a few days ago. We have talked about it a couple of times and decided not to do it. Pride is why. I know this was hard for Tony. He set up a page on the site gofundme.com. He wrote about needing a van to take these trips. My right leg is pretty bad so I use it for walking only when really needed to avoid injury. I can’t just go walk around the mall or take a walk outside. We have a transfer chair that I have to be pushed in. When we are out I’m often wanting to go a different direction. Before it was no problem, we just set a time and place to meet back up. Now he, or whoever is pushing me usually has some resistance to deal with. I see something I want to check out and I grab hold of something with my stronger left hand or put my stronger left foot on the floor. If I was able to take my power wheelchair it could be like old times. I could ride off to where I want to go and meet up at a set time and place. It would be too much trouble in my opinion to take the road trips using the manual chair. Tony knows all this. He made the page and showed it to me. I know Tony well, and I know he swallowed some pride. He has never asked for financial help. He set a goal of $20.000 for a wheelchair van. We looked and researched and decided a while back that it will cost between $15,000 and $20,000 to buy a reliable van for travel. We have always planned to do this when the house sold. It’s been on the market well over a year and ALS isn’t waiting.

I know I started with saying a whole lot of nothing has been going on when actually there has been a lot going on. It’s just things we’re not used to. I’ll say yet again, ALS changes everything! That is not an exaggeration. Whether I make it to the operating room or not, van or no van in time, I know I have a husband in this ALS deal 100% with me and that’s a great feeling. I know many people with ALS don’t have that. It’s priceless!

Of course while I’m here, I’ll give the link to my gofundme page. Check it out. Neither of us would want a person to give a cent they didn’t have to give, we also want everyone to know that no amount is too small. Here it is:

http://www.gofundme.com/47xg4g

I’m going to listen to some music and maybe watch some TV so I’m ending here and will hopefully be back sooner with the next post.

Until next time, take care,

April

 

Stem Cell Study

What a day yesterday was!

This has been the hardest blog post for me get going with. I’m just going to start right off with why. I am officially in the ALS phase II stem cell study at Emory. Even though I’m officially in the study, Dr. Glass made very sure I am aware that between now and the surgery date, which has yet to be set, I must continue to meet all of the very strict criteria, I can still be dismissed from the trial as late as the day of surgery. I was also reminded and made very aware of how dangerous this can be. Messing in any way with the spinal cord is in no way to be taken lightly.

I’ve never felt quite like this in my life. I feel frightened and elated at the same time. I also feel a strange sense of guilt. I know many people want to be in this trial. I try to remind myself I didn’t win a trip to the moon. I was given an opportunity to help move research along at great risk to my health and even possibly my life. Knowing so many others would gladly do the same is still what gets me. It’s still the day after and I am still coming back into myself.

I am going to stay focused  on keeping myself in the best health I can be. I will take care of my body, follow every order or even suggestion given to me by Dr. Glass and the study team regarding this. If not I don’t think I would be deserving of it. I’m doing this for all of us and for all who have lost their lives to ALS. I’m taking this very serious.

Please don’t get me wrong. I’m not trying to come off as I’m not harboring a small light of hope that I will get some sort of benefit from this particular surgery. I wouldn’t dare insult your intelligence in that way. However, this is still a safety trial. I am taking a huge risk.

Anyone who really knows me can tell you through my life I’ve always said my biggest fear is to be paralyzed. So being diagnosed with ALS was like my worst nightmare coming true slowly. I’ve tried finding comfort in knowing it doesn’t affect sensory, but as we all know, that is a double-edged sword.

I will be taking care of myself but I’m still going to be myself. I still have other things I will continue focusing on. All this will continue as usual. To be honest I’m telling this to myself just as much as you, my readers, right now. I also know it’s true. I’ll continue blogging, preparing the “show” I’ve been working on for my family, my documentary and every other project I have going on. It’s been keeping me going since my diagnosis.

Yes, with it being so new, I’m adjusting. I know me and within a couple of days this will be something else I’m participating in for the purpose of ALS. More in the forefront of my thoughts at times because of all that comes with it, but another study nonetheless. There is nothing any of us do that is too small for this war we’re in with ALS. Everything counts.

I will keep you up on my feelings but I won’t be blogging specifics of the study after surgery. I’m not the only person in it, I’m not in charge or aware of exact outcomes so therefore It’s not my place to share what I don’t know. My blog is still about me and how I’m dealing with ALS, that’s what I’ll continue to share with you.

As I said, I’m still taking this all in. I hope I’ve explained myself well about how I’m feeling right now. I’m not a professional writer. I do love to write and I’ve found a great outlet in blogging.

I also said I’m still me, this is another day in my life. I’m about ready to have dinner with Tony. I’ll watch my favorite show, Big Brother, then I’ll surely have to rock out to some Rolling Stones!

please visit my website: http://thealsexpress.com

Until next time, take care,

April