Posts Tagged ‘ALS awareness’

I know all about bad days with ALS

After my last rambling post, I want to at least have a topic to stay on. This isn’t a frenzied post but will still cover more than one topic.

My Care Services Coordinator offered me and Tony the opportunity to make the trip to Washington, DC for National ALS Advocacy Day. It’s something we’ve both wanted to attend. After talking over it a few days we decided to not go. It was a tough decision because I think it’s really important for us all to be united in such a way and able to speak directly to people who can be a voice for us all. The timing is just off for us right now. If I can’t do it being fully prepared, I’d rather someone else go who is, but can’t afford the trip to be there. I’m disappointed about it, but feel we made the right decision and let her know this morning. Thank you to all who will be there on behalf of the whole ALS community. Who knows what next year will be like, but I hope to go then.

Time for cloud storage when it comes to saving important files. We had a Seagate external hard drive crash that had so much on it that is important to us. All the work that had been put into my after death messages to my family. Something we started working on not long after my diagnosis. At the time I was calling it, April’s Show. Why not be a little narcissistic after life? A lot of work and footage is on there and a great comparison for pre and post surgery. We also have  footage on it that at I think, at least some, will be shown on my documentary. I was devastated for days while Tony  tried to recover it. We finally came to terms we’ll have to pay someone to get it back. We’ve had extremely varying quotes from under $100.00 to close to $1,000. All very confident, but who to trust? I know little to nothing about this but have heard of low cost people making it worse and truly irretrievable. Tony keeps trying to assure me we’ll get it back. I don’t think he’s lying, but I won’t feel better until I see it. I can’t stand to think of losing all that. It’s really invaluable to me. I hope to get it back and will never trust another external hard drive.

I’ve been wanting to devote a post about ALS and how life goes on despite it. The great things go on and hopefully you get to be a part of that when you want, but the more you progress in symptoms the more you have to count on other people to make it happen and can turn that time into hardship for them. This isn’t something that is extreme for me right now, but I’ve thought about it since the beginning. Right now Tony has taken most of any burden without complaint. He has received some help. We’re both a little broken and want to go it alone as much and as long as possible right now. There is also the tragedies that can strike any family. That really scares me when I think about being further in progression. Before the stem cell study, my future was a little more predictable as far as progression and approximate timelines of how bad things would be and how much help Tony would finally have to give in and accept. In the best way possible that’s a little more unpredictable right now. I still have thoughts of not making it to a close loved one’s funeral when I’m much further along. Not making it to all kinds of events, good or bad because of ALS. Right now, I have missed a few things because of extreme fatigue or a place not being handicap accessible. The fatigue is really the hardest to deal with for me at this time. I feel not being there for something is hurtful to others because the fatigue is not tangible. No one can see or feel it and it’s easy to not be taken serious. Everyone feels tired, but goes on. ALS fatigue is different. It’s more than tired. I would have had a hard time understanding it before experiencing it. I’m so thankful to have a husband there to make sure all is taken care of. ALS is horrible to the afflicted and those who take care of us.

I want to touch some on life post stem cell surgery. I’m still very much enjoying the improvement in dexterity and strength in my right hand and arm. I’ve been hesitant about mentioning my arm, but the improved strength is no doubt there.  I can hold a plate of food long enough to set it down only using my right side. I can play with Abby easier. I can eat and put a fork through a piece of pineapple. I could not do these thing before. I used my left hand, that had more strength. It has even improved. I can still project my voice louder and speak longer without becoming hoarse for much longer. My speech is most often very intelligible. I have a couple of things I think cause the occasional major slur, mispronouncing words here and there. One is that the right side of my tongue is still a little atrophied even though it seems stronger when moving food. The second is the roof of my mouth. You can slide your tongue along the middle roof of your mouth and feel the bony separator in the middle. The left side of mine curves up which is how it has always been. The right side only has a very slight curve up. It’s like it’s collapsing on that side. The differences in the tongue, even though it is mildly atrophied, has the sensation of being thicker. Between the tongue and the roof of mouth flattening down on that side, if not being very aware, some words will sound slurred. Other than feeling my tongue is a little stronger moving food, there seems to be no real difference in tongue or roof of mouth since surgery. This is my opinion, I haven’t been told this. I feel this was something actively progressing at a noticeable rate to me before surgery. Since surgery it seems to have just stopped. Eating and drinking water was at the beginning stages and I was preparing for continued worsening speech and swallowing water which Tony had already started thickening because even though I was never in a real choking situation I was having more sudden coughs from feeling like it was going down wrong pretty often . It still happens once in a while now but I don’t use thickener anymore. I was noticing more trouble with coordinating the chew to swallow process. I deal with that much less and eat with more ease. It’s either a slight improvement or a complete halt of these things and staying at the point I am used to working with. I’m doing my best to explain what I’m experiencing. I have no other reason to believe this stopped or possibly improved other than participating in the Neuralstem, stem cell study. The improvement in my speech and my right hand is obvious to people who knew me before surgery.  What I’m experiencing with my soft palate and tongue are much more difficult to get across, but these are very important issues regarding quality of life and even extending life. That’s why I’m attempting to explain the feeling of it and what losing these abilities mean. The ability to speak and swallow liquid and food longer is amazing to a person with ALS.   A lot of the things I’m experiencing as improvement or halt of progression is not as obvious, especially to people who weren’t around me much. The people who know me all noticed improvement in speech, people can see very clearly my ability to use my right hand better. It’s hard to see and understand a soft palate stops collapsing and better tongue control. As I’ve said before I hope I’ve explained these things in an easy to understand way.

There are a couple more things I want to mention but not until next months appointment at Emory. I have some questions myself and want some answers before I start posting about it. I still just can’t say enough how lucky I feel to have had the surgery. There are new studies and studies in stage II and III that hold promise. In Arizona the House Committee on Reform and Human Services approved,  ”right to try” by a vote of 5 to 3. The bill now goes to the House Rules Committee. If approved, it will go to the full house for consideration. This is expected to pass and I would expect other states to follow. Even though it still isn’t happening fast enough for people who are dying, it is progress and I want everyone to keep hope alive and keep fighting. Even though it’s slow, there has been more progress in ALS research and other rare diseases in the last few years than ever before.

Please believe me, I know all about bad days with ALS. I’ve had days when I just want to dare someone to tell me to be positive. These days are normal so don’t feel guilty over them. There is someone else with ALS feeling positive for you. Never give up!

Until next time, take care,



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,


I’ve been dealing with quite a bit lately, a lot having to do with ALS and some issues totally separate. When you have ALS, it can consume your life with symptoms, adaptions, planning ahead, money issues. The list is endless. At the same time life is still happening outside of ALS and even a healthy person’s life is not all rainbows and butterflies all the time, tragedy can strike a person or family at any time. You have to face it ALS or not.

With that being said, I want to share great news with you and focus on something positive. For a while now walking has become progressively worse. I can still get around some with help of a walker and my AFO. In my opinion I’m still lucky because only one leg, my right, is very weak and has lost a lot of muscle. With my left leg being stronger it’s very helpful with transferring, I call it twirling. I get positioned and holding on to something or someone I twirl on my left foot to whatever I’m moving to. If both legs were as strong as the left, I would probably still be getting around with my rollator. It just doesn’t work out and is a hazard. I can’t go out and walk, it wouldn’t be long before I would be leaning on my walker and using upper body strength to make up for my right leg. It wears me out fast and It uses a lot of muscle strength in stronger muscles. As we with ALS know this results in those muscles atrophying and we want to keep all we have as long possible because we don’t get it back, and we certainly don’t need a fall injury. So getting out has been an ordeal for a while using a transfer chair, for who I’m with getting it in and out of the trunk and then I’m dependent on them pushing me.

The great news is we finally have been able to purchase a wheelchair accessible van! It’s so wonderful to drive out of my home and into the van and leave. Then I can drive out and independently go the direction I choose. This is so important not only for convenience but also emotionally. I have some independence back. Leaving home isn’t the dreaded experience it was.

The donations received on the website that Tony set up was a huge help to us getting this van. Every donation, no matter how small or large meant so much. With the kindness of everyone who donated we were able to purchase a van that we are very happy with. No it’s not brand new, it has high miles and it’s a decade old but that doesn’t matter to me. It’s in great condition and certainly able to make long trips, The place we bought it from, our local Mobility Works dealership, made sure we had what we need and wanted in our van. They even had new shocks and struts put on and placed the EZ lock system in the van and the locking pin underneath my power wheelchair at no additional cost. The entrance/exit ramp is side entry and fully automatic. That’s a feature we wanted, especially for times when my Mother is driving me, she wont have to deal with pulling a ramp out and risking her back. I also get to ride shotgun. I was willing to sacrifice that but that’s my spot and I’m happy it worked out. It rides smooth and when I look at it I don’t see an older model van, but I don’t keep up body styles of vans, I certainly thought my mini-van days were long over with the kids grown.

I’m very happy with it and I want everyone to know how much Tony and I appreciate everyone who donated and shared the page. It all helped make the purchase possible. Thank you all so much!

A couple of pictures so you know where your help went:

My New Van!

My New Van!


My New Van

My New Van


This of course makes our trips to Emory less stressful as well not having to use the transfer chair. The smallest things add up. At valet parking we don’t have to hold up the line by taking time to get the chair from the trunk and me twirl on it. On days we go to several different areas for tests, Tony is free from pushing me and I have the freedom to be on either side, front, behind him or to stop for a second to look at a pretty sitting area outdoors. I’ll admit to liking the thought that if I’m ever really frustrated with him, I can roll on over to the other side of a waiting room if I so choose, although I don’t think that will happen, I have the ability. It may not seem like much, but it is a lot to me.

We will be going to Emory next month for some much awaited tests and it’s always nice to see the people we’ve come to know because of my participation in the stem cell study and other’s I’ve participated in. I’m not sure exactly when the results will be published or first mentioned but I do know this study is moving faster than phase I with less waiting for results. Something exciting for all of us to look forward to!

I mainly wanted to express my gratitude and excitement over the van. Thank you all again for the support in any way, money or share, even the private thought of hope for me get one.  I will pay it forward in any way I can for others.

Thanks for reading. Until next time, take care.