Posts Tagged ‘MND awareness’

The outcome measures I’m writing about were documented, but have not been officially published.

I had my first real outcome measurements since my stem cell surgery last week and the feelings are difficult to explain. Overwhelmed doesn’t do it justice.

I’ve mentioned better dexterity in my hand allowing me to sign and communicate much easier with my son.

I’ve mentioned I was using my ventilator with AVAPS setting less.

I’ve mentioned the ability to project my voice and I don’t become hoarse as quickly while talking. My voice was almost always better early in the day when I hadn’t used it much. There wasn’t any specific testing for my speech. Some people say they never noticed it being a problem, they just didn’t talk with me at the right time. I can be heard louder and for longer now without the hoarseness.

There was specific testing for the things I’m mentioning here and more.

I had incredible results and I’m going to explain the changes the best I can.

While doing my daily range of motion exercises, I started noticing myself doing it with more ease than before surgery and  I felt a new sense of strength. Just the way my left side started taking over my right side as it weakened without my initial awareness, when my right side began improving, it began taking over old roles without intention. I just started noticing myself doing things again. Even after I was very aware this was happening, there was a fear of saying so, and a fear of being proven wrong. I worried about giving others with ALS false information, false hope. I was really shocked when I started noticing  more muscle mass in my right forearm. My husband could see and feel it  but kept denying it saying muscle can’t grow that fast, especially without working out, which I don’t do since my ALS diagnosis. I think he had the same fears of being wrong no matter how obvious. I’ve always had great upper body strength for a female and I worked out and had obvious forearm muscles. My left was getting smaller but my weaker right was pitiful. The once large, steady protrusion of muscle when flexing had reached the point of about the size of a walnut and my arm would tremble at the slightest attempt to flex and feel sore while trying.

My husband finally couldn’t help but acknowledge my muscle returning while rubbing coconut oil on it. my right arm had been  becoming progressively limp and smaller. After surgery and time I could hold my arm and turn it better and he had to admit seeing and feeling the muscle and strength returning. ahh… sweet validation. We both had it drilled into us that this phase of the study wasn’t focused on improving my condition. The word improvement was avoided. Nobody, for various reasons, wants to give a person in a study like this and in this phase the slightest chance of false hope for good reason.

When it came time for my strength testing, as nervous as I was, I knew I was stronger and did I ever prove it. Some results were really impressive. In a couple, my right arm actually beat out my left. I had been  losing my wrist strength fast. There’s a test of placing your forearm on a hard flat surface and lifting your hand straight up at the wrist. The force it takes to push it down is measured with a dynamometer. Before surgery I struggled trying to not let my fingers bend down when lifting my wrist and my hand went down consistently against less force no matter how hard I tried to hold it up.

This time I could lift my wrist keeping my hand upright and fingers straight. I don’t know the exact number but it took a lot more force to get it down. That was only one of several glorious moments of proving my strength to myself. I feel totally at ease saying I have a lot of strength back.

My breathing scores improved several numbers which is absolutely great. In the realm of ALS, I already had descent breathing scores. It always shocks me to hear of a person’s being in the twenties range and even lower, I can’t imagine that feeling, I think low 70′s, maybe high 60′s, was lowest score I’ve had sitting up.  With getting highest of three FVC tests, with great effort, I was maintaining low 80′s using everything I had. I know I wasn’t breathing that in daily activity.

I expected to make all three in the 90s. They were all in the higher 80′s and better than before surgery. Not making it to the 90′s range doesn’t take away the improvement which just doesn’t happen in ALS and breathing. It has been enough to notice a difference. However, I plan to use my ventilator more often with the slightest feeling of need. I’ve said before it’s my opinion early use of non-invasive ventilation, (NIV) helps preserve breathing longer. I was lucky to have breathing support at a very early stage, right at the time my scores indicated a drop when on my back and a need for support. Many wait much longer before having help with NIV.  I know some aspects of ALS are more aggressive in different people no matter what you do. In my case, I strongly believe early intervention for my breathing made a difference in the speed of decline and think it should be taken serious in every patient.

Sometimes I look in the mirror and see improvement in my face muscles. Other times, definitely not. I think, like my speech, the more I use it the worse it gets. There is definite improvement in my speech. The jury is still out on my face muscles.

I think it’s important to say my arm strength isn’t like before ALS. It tires much faster and it’s not quite the same feeling. There are so many muscles that you don’t think about that compensate. My way of expressing it is having a feeling of being patched up. My new strength is different and I adjust accordingly to make it work, like holding my arm at different angles while doing tasks. It doesn’t bother me at all. I’m happy to work my fork through something I couldn’t a few months ago. It may not make for great table etiquette, but that’s never been an extreme concern of mine.

I can turn door knobs easier, communicate with my son easier, use both hands at the same time better, and several other things. It’s absolutely wonderful.

I have written about positive things since my surgery, even before testing. I think it’s only right that I mention any negative things that may or may not be associated with the procedure.

I have been dealing with extreme fatigue. I had fatigue before surgery but this is a new level. Some days I just can not accomplish much of anything. It’s not from lack of desire, my body just won’t or can’t cooperate. My humble opinion is that it is already working pretty hard and I look forward to having fewer of these days.

I’ve never been one to have a lot of headaches. I go through days of piercing headaches that follows a path from the back of my head, then covers about a two inch line up the side/top of my head ending at my eyebrow where it gives the sensation of pushing my brow down. Sometimes I’m sure it’s down but my husband assures me my eyebrow is where it always is. This isn’t constant but will certainly change a day’s plans.

My neck is still pretty sore at times. That may seem naive considering it was such an invasive surgery, but I have fully healed and I expected any neck pain to go away after healing from surgery. This, right now is my least bothersome. I have to put my effort in how my neck is positioned while sleeping and if I sit the wrong way too long it gets very stiff. It take a few minutes of slowly moving my head side to side and up and down and it’s usually fine after a couple of minutes of that.

One more thing of which I have no idea of whether it has to do with surgery, but I’ve been dealing with some extreme insomnia, this is likely not due to surgery but it didn’t start until after so I felt it is worth mentioning.

Lastly, there are the immunosuppressant  drugs and their side effects. I’ve had mine tweaked some, but have had no major problems.

Not any one or combination of negative things I mentioned would cause any reluctance in me having the procedure. It has proven more than worth it for me.

I feel it’s important for me to say I am speaking only for myself and my experience.

As much as I am grateful for all this, I never stop thinking of everyone with ALS. This study has shown improvement in phase l and phase II. The FDA did approve a fast track process in phase ll which will be completed with full report hopefully by December.  It’s proven enough in my opinion to have this moving even faster. There should be no delay in moving forward and available at more centers so more people have this opportunity. It has been proven to help people including me and this is why I’ve felt compelled to share my experience and raise awareness about it. It is Neuralstem, 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 study I’m in.

I haven’t been cured, I’ve improved in areas and have no idea how long it will be before I start declining in these areas again. By continuing with a larger groups of people, we will learn more. We can’t stop or slow down now. It has shown to have too much potential.  I’m not saying it should only be this study. Any trial that is showing this kind of positive results show be put in the fast lane with a larger population of ALS patients involved. I speak of this study from personal experience.

Thank you for reading, I’ll be back with more of my experience.

Until next time, take care,


It’s been longer than I would like since my last post. I used to feel panic coming up on a week without blogging. This has been something helpful to me in dealing with ALS that I don’t want to lose. I try to not worry myself about it. If it’s stressing me, that’s no good. Having the desire to write, like now, is what helps me and makes it worth it. What has continued to make it worth it for me all this time is the support from followers. Thank you all!

I’ve been really frustrated because a month’s worth of pictures are gone for my past due, My Daily Pic, video. Just bear with me here – The first video is, I think, all pictures of my face since my face muscles were affected early on and honestly I really wasn’t thinking of much else when I started it. So my second was originally going to be random pictures, but then I realized Isolated areas are easier to follow the progression of subtle muscle atrophy. I bought a sheet to have as same background on the bed and show my legs in rotation at different angles daily. Seems like no big deal, but it actual took a lot of effort. Some days my husband was busy, or I didn’t feel like it. With the sheet and different angles there was more preparation than the first time-lapse video. I kept check on the camera and was really  happy with it. I’ve written about my whole right side being affected more and it was easy to see my right leg atrophy comparing it to my left leg. The pics were never saved on the computer and the SD card is gone. We kept it up until about mid August, then stem cell surgery became top priority. I had planned to pick it back up shortly after surgery to have more time pass. It was a while before I was prepared but it would have been up early this month. Now I have one pic from, I think the first day when we were trying different ways to see what worked best. Now I’m deciding if I want to just show a few random pictures between the last video and now for a short video, or just skip it and go back to legs or another area altogether.  I imagine a lot of you could care less but I do get requests and questions about when the next time-lapse video will be out. I’m frustrated about it, but that’s life, that’s living, right? I’ll figure something out because I do want to continue with this. I’m considering going with my arms, and hope to show continual improvement from my procedure. Don’t know yet, but I will get started on something.

I have been dealing with a mild virus that I’m over now but still dealing with a lot of fatigue. I see my husband in action all the time. I do what I can but my days have been filled with movies and documentaries lately. Mainly on Netflix. My energy will improve and I’ll be back to getting more accomplished, taking a little pressure off Tony. Also looking forward to getting out more since I have the van. We were finally hit with some snow that was just bypassing us every time. There are steep winding hills either way to get out of our neighborhood so we’ve been stranded a couple of days too.

I go back real soon to Emory for my first real outcome testing since surgery and I’m really excited and confident about that even though I still have the dream at least twice a week of going and everything being worse. It’s not going to happen. As everyone else, I’m also looking forward to the complete update on all participants. I really hope the best for everyone. For the benefit to them and in hopes it will speed up getting through phase III and having this available to all. I surely can’t be the only one feeling I’ve benefited. I’m not going to lie, I have primarily been focused on my procedure and testing myself often, but I am also trying to keep up with what else is looking hopeful for a real ALS treatment and I’ve read some that look promising and are in pre-clinical trial phase or about where my study is. What saddens me is people in later stages are most often excluded from these trials. Everyone alive and willing should be given an opportunity if they choose. The study is too small is no valid excuse to me. Expand it. So many trials have diagnosis time exclusions and I think of the people knowing this. This goes for everyone, but it really hits me hard thinking of the person who has always participated in research they know won’t benefit them. Then they miss out on something with the slightest chance of hope because they’ve had ALS too long. That’s one hell of a slap in the face. I do try to realize there are often valid reasons for this , but I know  that slap doesn’t sting any less!

A lot is being learned from these studies and I really believe we are closing in on ALS. I do have all my personal hope eggs in one basket, and it’s still full.

My biggest hope is that within three years or sooner,  the day a person is diagnosed, they won’t have to hear there is nothing that can be done except to keep them comfortable as they progress to their death. They will be told there are life extending treatment options, there is hope. That day isn’t here yet and I won’t stop fighting for it as long as I’m alive.

I will be back hopefully sooner than later.

Until next time, take care,


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,



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


4 days post surgery


5 days post surgery


6 days post surgey