The past few blogs have been progressively difficult. After deleting several long drafts I’ve decided to just sit, write and publish. I hope it comes together enough to be worth reading.

This used to be more like a public journal of my personal experiences and feelings while dealing with ALS. The stem cell surgery changed that for me in many ways and I didn’t see it coming, even though looking back, I should have.

I’m going to write a little about what I’ve been dealing with. On one hand I want to tell everyone about what I have experienced post surgery, about several changes, things I can do now that I couldn’t, at least as well before surgery. At times I have an experience of something seeming to not be as well as I first thought, but it returns right back to improvement. I think to myself the improvements I’m experiencing can’t be attributed to a placebo effect. You just can’t will or believe strong enough to reverse this condition.  I have dreams of going for the testing, the proof,  that this is really happening and in every dream I am worse than pre-surgery baseline.

There are things I still struggle with. I’m in no way meaning to send a message that I’ve been cured. I believe I’ve been given more time and quality of life. How long or if I will continue to feel more improvement is something I can’t answer. I can say before this Neuralstem study, nothing else came close to these results.

Everyone wants to walk of course, but with upper body strength it is much easier to have quality of life in a chair. The cervical spine procedure I had is really what is meant to help people live longer with the ability to breathe. I’ve known people who were still walking and driving but respiratory issues caused a faster death. ALS can be a very different journey for individuals and very similar at the same time. One may live several months to several years, and some live quite a bit longer but always progressing to the final stage of paralysis. Breathing issues is the most common way it takes a person’s life. In many cases choosing to have a tracheostomy performed can add years of life. It does come with a big emotional and financial cost.  You will need constant care. It was something I had made no decision about because it does extend your life but you keep progressing. It would have been real difficult to me if my breathing was very bad early on while still having decent abilities in other areas to make that decision.

My very first  FVC breathing test at Emory ALS clinic day was 101. I felt great about it and expected to continue for a long time. I think every time I returned it went down a little more. I started waking with headaches and  a feeling for a deep breath that would have a crackle at the end of the deepest breath I could take. I was walking with a rollator at the time also and found myself out of breath with less exertion and stopping to sit and catch my breath. After x-rays coming back clear I had a little more extensive testing at Emory. The breathing scores while on my back were low enough to qualify for needed assistance. I was lucky enough to have a Trilogy 100 ordered. I won’t get too into it now, I believe I did in the blog about my Trilogy, but it has AVAPS setting that I found much better and easier to use than the BIPAP setting. You can have two settings only at once. I chose AVAPS for mask use and for the Puff System of Ventilation for when I just need a few breaths.

Now for the news on my breathing. I haven’t used a mask in weeks. I’m very grateful for the Sip and Puff because I do still use it as needed. I have no doubt my ability to move air in and out has improved though. A part of me can’t wait to show it and it’s also one of the things I always dream about being worse.

My feelings have been pretty raw while experiencing changes and also trying not to over-focus on them. This and several other reasons have made blogging difficult for me. I hope you bare with me as I get back in the groove of regular blogs. I do have much more to say and hope others experience great results with other trials, and the others in this trial benefit like I have. I’ll be back soon as possible. Thanks for reading…

Take care,

April

 

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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.

Aprilstemcellimage

fresh out of surgery

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4 days post surgery

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5 days post surgery

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6 days post surgey