My First Real Outcome Measurements

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,

April

I won’t Stop Fighting.

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,

April

My First 2014 ALS Blog

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

 

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

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

I Have Experienced Great Kindness

I have experienced great kindness over the last week. It’s so easy to feel bitter, especially with ALS. It’s easy to get frustrated with somebody complaining of something they have to do when right now I so wish I could. What I have to do is keep reminding myself I haven’t always had ALS and I could win competitions whining about everyday things. Honestly I’m not really mad at the person complaining. It’s more so a feeling of wishing I could still be in that position. I know most people in situations similar to mine will understand this feeling.

It’s easy to start thinking nobody cares. I’ve been proven otherwise lately. My gofundme page has brought me to tears. People I don’t know have sent their money to help. People who are struggling themselves and in need of something. If it’s not from family or friend of family it’s someone else who truly understands the need of a wheelchair van with ALS. It’s also been surprising to have people sharing and spreading awareness. Anybody reading this who has given or helped spread awareness I want to thank you from both Tony and me. It’s hard to express the gratitude and the excitement of easy and comfortable transportation in my future.

As if that isn’t enough, yesterday, Tony, my Mother and nephew drove a few hours to pick up a nice king size tempurpedic bed. It was from a family who lost a loved one to ALS and wanted the bed to go to a pALS. They could have easily sold the bed but chose to give. The bed is so comfortable. It’s adjustable for raising head or feet and it has a massage feature. We are so grateful.

Being at the receiving end of such kindness is an indescribable feeling. Believe it or not, and I’m saying this because I want to stick to being honest as I said, there’s almost a negative reaction in me. A defensive, I don’t want anything if I can’t get it myself feeling. I feel guilt for any negative feelings about my situation. Sometimes a few minutes of anger gets me through a day. I’m realizing I can still do that and I don’t think anyone who has helped will hold it against me, even though that’s what my mind wants to think. I have much progression ahead, so I best learn to accept the kindness of others gracefully and without guilt.

Tony and I have talked even before this past week about when I’m gone. Anything that I have that can help a pALS will be given directly to someone or put in a loaner closet. We will keep it going. That is unless the best thing for us all comes to be first, the cure. A lot of great things happening in research.

Of course plenty of other things going on. I needed to share this now. Thank you to family, friends and complete strangers for your kindness to me and Tony.

Until next time, take care,

April

The ALS Roller Coaster

I love roller coasters! I love them to slowly climb high and drop fast, upside down and with all kinds of unexpected twists and turns. I’m on one right now, but it’s no fun adrenaline rush. It has all I could ask for in a roller coaster. There is a big difference, this is real fear, real danger and as of now, it only ends one way. Death. Nobody wants to ride the ALS roller coaster.

There are times when it just tops the high hill after a long slow ride up and the exhilarating feeling of soaring down the hill. There are times it slows and the ride is smooth, long enough to take a breath before you suddenly speed up and twist around. The best parts are when you start down that big hill and when it slows long enough to breathe and enjoy the breeze.

I equate going down the big hill with getting something you need, something that is really going to help you through your days, maybe keep you independent longer or when everything comes together long enough to laugh with loved ones and ALS isn’t forefront in your mind. It’s nice, fun.

I equate the smooth slower speed part with being at a time that you have what you need and it’s all working smoothly. Even though you know it will change, it’s nice when you have a period of predicting the day. Everything is in order and running smooth. You can just live life.

Then comes the unexpected twists. Even though you knew it would happen at some point, It still catches you by surprise when it abruptly turns you and your whole world upside down. Everything must change yet again to accommodate your new needs.

The slow climb up a hill. That’s where I am now. I’m in a state of waiting and ever so slightly moving up, moving forward. It’s not the only thing I’m on a slow climb up for, but the stem cell study is the primary part of this slow climbing hill. Will the ride be stopped in the blistering hot sun over something out of my control? What will happen when I make it to the top and surgery is performed? After healing, will the ride stay smooth a while or will everything be turned upside down in every way that is worse than the wait? Nobody can 100% answer that even though I feel very positive about the outcome. Even in the odd chance there is a bad outcome, there will be no regrets whatsoever.

I’m working on patience and I know time will pass and I will reach the point of where answers are. Patience is the key. Sometimes harder than others. The past two days have been rough for various reasons. I know much better days are ahead. I’m careful looking too far ahead because I’m not at an amusement park. This is the ALS roller coaster.

I appreciate you reading my, written as I thought them, ALS analogies.

Until next time, take care,

April

Hello and Happy Friday

Hello and happy Friday to those who keep up with what day it is at all times. I once did. Now, I do when needed but Tony keeps me in check and our calendars in sync so it’s just a quick look away. Dad will be bringing dinner over about 7:00 that Gracie cooked. Friday is usually dinner and movie at home night here for us. Not sure what we’re watching tonight. Embarrassingly too lazy to sift through movie channels and Netflix today so he is going to Redbox. Either Zero Dark Thirty or Lincoln. I saw Lincoln at theater with Mom. Wouldn’t mind seeing again. Neither of us have seen Zero Dark Thirty. I don’t think we’ll go wrong with either.

Everything went well at Emory ALS Center this week. I did get my Biomarker study in  and that makes one full year of my three year goal of participation. I feel good about that. Tuesday was a long day. It completed my required three months observational period for the stem cell study also which is nice to have completed. I will continue going monthly even though there is still no 100% positive I’ll make it to the OR. When the time is closer to a surgery date there are several more tests to go through in a short period. These must meet the strict requirements completely or I’ll not enter the OR. It can become overwhelming thinking about it. One, seemingly minor, test can take it all away. For that reason we try not to think about it all the time. Also I tell myself a lot that in the small chance something disqualifies me, I have these months of observation behind me in the case another trial I’m interested in requires that. Of course this is what I’m focused on and it would be a huge disappointment. I would keep moving forward. That’s where I am with this.

I did get some news from Tyler yesterday that it will be further away before he moves back permanently. Probably a full year. It’s for reasons out of his control really at this time. He is going to try to make more frequent trips until then. I’ll continue to look forward to them all and when he’s here for good. Everyone’s life isn’t going to be able to completely change to accommodate my ALS. That’s just the way it is. All I can do is cherish every moment and I believe I have a lot of moments left.

Amanda and Brayden came yesterday. Amanda did a good bit of housecleaning for us. A big help to Tony. I visited with Brayden while she was busy. Now that he’s a full-fledged walker, It’s a different experience from the days of him lying on my chest. As we all know, they grow so fast. After Amanda finished we ate a little while discussing her recent Indiana trip and other things. More cherished moments.

Everything is actually going well right now. That makes everything easier to take in, keep in context, and just live in the moment. I hope for it to stay this way. Surely those pesky, frustrating minutes will pop up here and there but, in the big picture I feel ALS content, if you will.

Speaking of minutes, it won’t be long until dinner arrives and showtime starts. I just learned we’re watching Zero Dark Thirty. I need to get a couple of things prepared so I better get to it. Thanks for reading. I’ll be back with more soon.

Until next time, take care,

April

Family Updates

What a busy past couple of days I’ve had! The best part for me is that it wasn’t all ALS stress busy. Friday was an especially nice day. One of those rare days that the stars align just right. I wasn’t having or feeling particular bad ALS wise, which I have been concerned about for this day. Tony and I drove about three and a half hours each way and proudly watched our son, Steven, cross the stage for his white coat ceremony. This is something he has put a lot of time and work into for a while. Once he made the decision he didn’t stop working hard to meet all the requirements and he is in the school of his choice. Now a new type of long hours of hard work is ahead. He’s ready.

Another great thing is the nice day didn’t end after the ceremony. We spent the rest of the day on a guided tour by Steven of his new city. He moved up a few months ago to get acquainted with it, but now his life will be spent on campus. It’s a beautiful campus. The building he’ll spend much of the next few years in is very warm and inviting with everything he’ll need at his disposal to study and prepare for the many tests ahead, including rooms designed to reboot your brain when on overload. The whole building has a home feeling. I could easily live there. If I was in a position to have a designer I’d be looking up who did this because it’s perfect. The campus is very handicap accessible, which I was very impressed with. I’m talking about Bill Gatton College of Pharmacy at ETSU in Johnson City, TN. Below is the video of him walking across stage.

I thought I would really be paying the price for the long day yesterday but, to my surprise yesterday wasn’t all that bad symptom wise. I am feeling pretty fatigued and a bit crampy today, but that’s Ok. It’s a good day to feel bad. My Mother came to visit yesterday for a while. This was her first time seeing the door completely up with the frame now covered by sheet rock and painted. It looks like it has always been there. I remember us first talking about doing something similar when we were looking at the house. All these years later and us selling, we finally got around to it. I can only imagine the arguments with the kids in those very early years of who got that space. Upstairs has four full bedroom, so the den/wet bar served as a bedroom a couple of times. but curtains in the doorway was the privacy. Now it’s basically a little apartment. It has served many purposes since we’ve been here. Now it will make a great Mother-in-law area, office, kids play area, man cave, a fifth bedroom. The list goes on. The next thing is getting the pedestal sink installed. These new features will surely bring in offers. I really want to stay now but, we need out from under the debt. I’ll enjoy while still here. I’m so proud and thankful of what all Tony has accomplished.

Our daughter, Amanda, and Grandson, Brayden finally made it back last night from Indiana. She returned with a new tattoo. At first I’m like, No! Why? Tony and I keep reminding ourselves tattoos don’t carry the same stigma as they once did. I had a couple way back when, thankfully easily hidden except when in a bathing suit. The looks when taking the kids to water parks. Crazy and now funny to think back on. I do have to say one is a little, well downright trashy, but people in line behind us often acted like we were nasty circus freaks and parents sometimes actually left the line. People are so closed minded to be so ridiculous. So, I’m trying not to be that way with our kids who all have at least one tattoo. At least they are tattoos parents wouldn’t cover their children’s eyes over. This time Amanda got a hand saying I love you in sign language with Tyler’s name. Her brother who is deaf. It’s a nice quality tattoo, I don’t think she will ever regret this one.

I must say though people, tattoos are permanent. Yes I know there is laser removal but, it’s expensive, time-consuming and usually leaves a mark, not just like your old skin. I don’t know but have heard many say it’s also much more painful than the tattoo itself. Today’s words of wisdom: Think long and hard before that ink is part of you.

Since speaking of two of the kids, I’ll go on with family updates on all. Tasha had a nice vacation recently to Louisiana to visit her husband, Billy’s family. I haven’t been able to talk with her in person about it. I’ve seen pictures and I know she and the boys, Jesse, Ethan and Uriah had a nice time and a much needed get away for Tasha from her regular routine of work and all that comes with three young boys. It’s always nice to get away and let your mind free from it all so it can recharge and be fresh to go back to work. It’s also that great time of year, back to school, and all the preparation that comes with that. I hope to see them all soon. Some visits have fallen through either because of ALS or the grueling schedule she has.

Tyler is still in Indiana and preparing to move back soon. He’s just getting all his ducks in a row and everything squared away so the move will be simple as possible. We’re really looking forward to having him here. It will be great having another set of hands and strength to help Tony with everything he’s been doing. I have no doubt he’ll jump right in helping. I’m sure he’ll also start going to workout with tony five days a week, work allowing. He always has during times of living here in the past. They both enjoy it even though they argue a lot doing it. Same when Steven would get in a routine of going with Tony to work out. I never know if they’ll come back temporary enemies or smiling and joking. I stopped trying to figure it out. I guess It’s a man thing. Someone didn’t spot the other right, took too much time on a piece of equipment totally messing up the other’s routine somehow. The reasons I’ve heard are endless and make no sense to me so I try to let them deal with it. It’s always back to normal soon enough for the next trip to the gym. That’s all that matters really.

As far as me, I’m still trying hard to take things day by day. Definitely think and plan for the future but try not to get stuck there in any negative way. That’s the way Tony and I are moving forward with this ALS monster that constantly needs attention and strongly desires to take away any joy. We kick it every chance we get.

I go back to Emory in a couple of days to go forward with testing needed for the stem cell trial. You have to be at just the right place in many areas to qualify and you have to still be there the day of surgery. This excludes a lot of people. I have a great feeling about this study and believe it will eventually change how we look at and treat ALS. It can’t happen soon enough! I’ll also be there for the Biomarker study. I’m more than ready to do this!

This has turned into quite a long post so I’ll end here for now and be back soon.

Until next time, take care,

April

Excitement and Disappointment

I’ve had lots of alternating excitement and disappointment lately. I guess for the most part that’s called life. It just seems magnified when ALS is always with you. That goes for the person with ALS and the people who love them. Don’t get too used to anything. It will change. What an adventure ALS is. If given the choice I would have chosen something else like the frustration of living out of a suitcase, moving from one 5 star hotel to another all over the globe. How awful! Yeah, I would have chosen that.

I’m a little disappointed we’re not fully downstairs yet. I’m disappointed that my husband and I can’t share a full size bed. We love each other but that’s just too close. My mom warned me. So after buying a mattress cover that I insisted on after seeing all the shows on the dust mites that feed on your dead skin, nice sheets and a simple bed spread, it’s a no go. So there’s a little disappointment. It’s been great really though. I’ve been spending my afternoons down there. Tony carries all the things I need down and It’s almost like leaving. With the TV mounted, it’s cozy. For one.

There are many silver linings! Our son, Tyler, is moving back so we will put the bed upstairs (tony will) and Tyler won’t have to sleep on the couch until he gets his own place. He will also be a big help to Tony with all the work he’s doing. Tony is almost finished with the door to our new space. Right now he’s waiting on some mudding to dry or something, he’ll paint the small area and it’s ready. He bought a 36″ inch door. I drove my power wheelchair through the frame last night very easily. So there’s some excitement. It’s getting close. He has to move the full size bed up and get our king size down, with a couple other items we’ll have everything we need to be down there full time. The next thing is installing the pedestal sink and we’re really set with what we have to have. All that is really much more excitement than disappointment.

Even though I’m scheduled to go back to Emory next week to continue with all the tests making sure I meet all the criteria for the stem cell study, I’m basically on call for a specific test so I can get it out of the way. It will make next week’s appointment much more likely to be able to do my Validation of Biomarker study on that same day. You won’t find me complaining about that! I’m ready to get it all finished. It will actually work out great and not disturb my biomarker study. Hopefully I’ll have the surgery early enough to be fully healed up and never skip a beat on the Biomarker study. My goal is to give three full years of that for research. So I’m hoping we can get that in early this week because the end of the week is when we go to Steven’s white coat ceremony.

It’s so easy to get overwhelmed, scared and stressed over it all and we do at times. Staying busy with all the different things we have going on is driving us crazy but, it’s exactly what’s keeping us sane really. I wish so badly I could be more of a help physically, instead of coming up with ideas for Tony to bust his ass working on. The physical work is helping ease his worries by keeping him occupied and busy even when his real work day is finished. We both agree we are taking no chances of risking injury to myself and not being able to meet the study criteria. So we keep up with my range of motion exercises and take no risks. I’m still eating healthier and all that good stuff and I’ll have a nice ground level, comfortable place to come home to for a quick as possible recovery.

My documentary is coming along slowly but surely. That’s a good thing because it’s going to span the rest of my life with ALS. This expense is a concern and we’re working on getting that all figured out. I must work on my website content. Every time I plan to dedicate some real time to it, something comes up. I will get to it. Keep checking it out. I’ve added and changed a few things. It still needs a lot of work.

Well, I’ve touched the surface of our excitement and disappointment we’ve been dealing with. I probably shouldn’t even use the word disappointment. Everything is far from perfect but I’m really lucky in so many ways. Most important, and no cost, the love and support of my family.

Please visit my website at http://thealsexpress.com

Until next time, take care,

April