Facing Who I Am

I’m finally writing a post. It’s not one I’m looking forward to. I’m facing who
I am and putting it out there. Sure, I can nice it up a bit, but I said I was
going to be honest about myself from the beginning and I see no point in
putting a fake persona of myself out anyway. I’m also having a hard time in
general finding words to describe myself and basically just write. It’s not
just free-flowing from my mind like before. So here goes.

I have had several obstacles in my way of getting this post out, but the main
reason is what I have to say about myself. I’m speaking for myself here but I
think it’s common for most people with this type of terminal illness. You get
to know yourself better. It becomes harder to deny the parts of yourself you’ve
spent a lifetime perfecting denying. I do want to give myself some credit. I am
a person with a genuine good heart and care for others. I’m also a real shallow
bitch, and the truth hurts. Let me explain a bit more with examples starting
with a little background.

I have ALS, there is a cure on the horizon which I won’t live to see. For
anyone reading my blog for the first time, I was in the phase II study by
Neuralstem Inc. and had 4,000,000 stem cells injected into my cervical spinal
cord. Feel free to go back in my blog and read much more about my experience. I
was lucky to be part of this study, having things falling in place by being at
the right place at the right time, meting all criteria, including just making
the limit of having ALS no longer than two years. You know, some people ‘seem’
to have these experiences more often in life. I don’t, yet I won the stem cell
lottery.
I don’t think I deserved this great opportunity and I’ll explain why the best I
can, but please know I’ll just be scratching the surface of this belief and it
will still be plenty.

I have some difficult losses that I don’t foresee ever getting back. I can’t
walk. Let me mention I wasn’t one of the three in this study to get lumbar
injections as well as cervical, which isn’t meant to help the legs. Guess what?
I did have some very unexpected strength improvement in my legs. I have a
stronger left leg giving me the ability to transfer. This is something people
with more extreme muscle loss and paralysis can’t do. I could do this with my
left leg before surgery although it was steadily declining. My legs are also
where I’m losing what I gained faster. I was still given more time with this.
Trust me, ask anyone with ALS who has lost the ability to transfer on their own
just what a big deal this is. It’s not perfect for me. It’s best if I can
transfer from certain angles and sides, but I haven’t fallen yet.

The thing is these benefits aren’t what I focus most on. I’m thinking I’ll
never strut my ass in 6″ heels again and look good doing it. Also remember, I
love my husband dearly and I’m not 22. This is a nice example of realizing how
shallow I am. I truly never knew I wanted that feeling so much. The loss of the
ability to walk, to me, means I’m ready to at least see the towel I’m going to
throw in.

Next: Before receiving my injections, my right hand was going down. This is
where I’ve had the most progression come back above legs. I have lost some
strength in my right wrist/hand/fingers but it’s loss of dexterity in my
fingers that has cause the problems. The frustrations of dropping things. What
makes it all so real and scary is that it’s made wiping my ass difficult. Loss
of control and dignity in this area is something I’ve always known would be a
huge deal for me. I’ve made it clear to my family that I will lie in my shit
non-ending before they clean me. I will no way allow my children to do this, or
parent, or sibling. The only people who I will allow is my husband, shame on
me, or a professional no one in the family knows. Outside professional care is
very expensive. I’ve been told I’m denying my family the ability to help in
such a way. I even understand it. I just won’t go there. I can’t take it. Major
guilt. I know this won’t change though. For the record, it’s not because of
some strange anatomical deformity and I have no herpes sores I’m ashamed of. I
just can’t have it. So it takes me a lot longer and many cleaning wipes are
involved. I’ve asked for help twice from my husband. I’m so thankful. I also
feel terribly guilty and gross. He handles it so well. I worry about him. I
love him so much. I want to hold the proverbial towel now.

I have felt extreme despair that I’ll be leaving my adult children way too soon
in their lives, There is so much of my grandchildren’s lives that I won’t see.
As much pain as this thought has caused me, I don’t let them in this nightmare
I’m living like I should. Like they want and probably need to be for their own
dealing and healing in this. I’m not saying I’ve cut them out of my life. There
are visits. There is text communication, but I do have my hands out. “Don’t
come to close to all this, I don’t want you to feel the complete impact.” I
mostly have myself convinced it’s for their emotional protection, but when I
allow myself to really think about it. I think it’s more of some fear part on
my end. I’m not ready. I don’t know that this is fair though. I love them so
much. They deserve the extra time I’ve received from the stem cells. Time to
let them in more before I’m gone. I can’t leave them feeling helpless.

Another reason why I don’t deserve the benefits of the stem cells. From early
on I’ve come to know several people living with ALS online. I don’t feel part
of the club anymore. It’s not a club any one wants to be a member of, but if
you’re in the situation, there are many benefits. You can give and receive
support and learn many tricks to deal with issues that pop up. You get all the
secret homemade tools to make life for person with ALS and the caregiver help
you along. I haven’t but have expected to be turned away at the door at any
time. Membership revoked.
I’ve scratched the surface of my very shallow thoughts turned to anger and
despair over the losses I’ve had. Now, let this sink in. I know several people
who are at the end. It could be any day now. I look them up most days in fear
to check and see If another life has been cut short. These are people who can’t
move, they are paralysed. the are either on 24/7 non-invasive ventilator, or
have gone on to a full invasive trache. They’re often in some degree of
physical discomfort or pain. They’re alive and so thankful for it. they use
their Eyegaze device to convey positive thoughts, to talk about another person
with ALS and how they are doing great at advocating and staying positive after
I’ve just spent hours angry that I can’t jump in the car for a ride, or shake
my ass. They often can’t move one finger. These are the ones that should have
received stem cells in time for this not to be. They deserve more quality and
quantity of time. Not me. Not shallow bitch who advocates by participating in
trials with unspoken hope of benefit. My biggest contribution that has only
hope for future patients is that I do endure, usually screaming like a child,
getting lumbar punctures for the, Validation of Biomarkers Study. This is
important and a great help to research. I give myself credit, but I still don’t
deserve the stem cells.

I have also stopped communicating with about every one on a private basis too.
Just stopped. To those who have reached out to me with no reply back as usual,
I want to give my sincere apologies to you. Most of them, I sat in front of my
laptop trying to reply. I don’t know why I couldn’t find even the simplest
words to reply. It had nothing to do with not caring. it has been a strange
inability.

I have to end this by saying, deserving or not, I am proof that we have a
genuine, true treatment for ALS. I know we have a few stem cell trials out
there now. Stem cells made from your own skin, and others. I hope for these to
have as much success. I can only speak for the stem cells I received in my
cervical spinal cord that are from Neuralstem inc.

It’s been 14 months now. I know without a doubt I would be much further
progressed without them. This isn’t just my belief. It is clinically
documented. The clinical data of the study results are supposed to be published
by the end of January. I’ve read a phase III trial will begin shortly with more
participants. I wish we could skip it and go on to have this available to all.
There are people still living with improvements, time and quality of life,
since phase I. This should be available now!

I want to thank everyone who participated in the ALS Ice bucket Challenge. Much
needed money was raised world-wide and is funding research, and many more
people were made aware of this horrific condition.

I’ve expressed here before that I’m a very private person by nature. I just
gave a very personal glimpse into my thoughts and feelings. I expect there will
be harsh messages, more than usual. I just want to say I know I will feel
overwhelmed with lots of nice messages also. Please don’t feel the need to
express how I really am deserving. It will stress me. I know who cares, and
thank you.

Again, I hope to blog about my move to a flat new home, including pictures.
Deserving or not, my life is much better here. If I can put this out, I can
surely manage that soon. I’m not going to bother to give a time.

So you all know that I know, I’m fully aware you are completely entitled to
your opinion of me.

Thanks for reading and take care,

April

Swimming the Solent

It’s been a while. I just have to write when the need comes and I feel the need right now. I ask you please bear with me for any mistakes as my thinking can be a little foggy right now. It’s likely I’ll make a mistake, but no harm, right? If you can’t figure it out just get with me.

I feel a little out of the loop on some things since I haven’t spent much time online lately while I’m still recovering from surgery. I am elated to see how the ALS Ice Bucket Challenge has raised money and awareness. Several people have poured ice water on themselves and donated in my name. Thanks to all participating in this!

I want to share my last Emory, nine month, post operative results. Again great news! I’m holding steady. I did hope and believe my breathing score would be a little higher, but it’s still at pre-surgery baseline and I was steadily declining. Even though I do have mild slurring, my voice is still stronger than pre-surgery. I still feel that my right wrist is slowly going back down, but I’m still above pre-surgery, so I’m not complaining. Both legs are still a bit stronger even though my right is pretty weak. I’m still not walking any real distance with my walker and having lots of joint pain and a feeling of broken bones in my feet when I do. I’m so thankful for my strong left leg that keeps me more independent by being able to transfer. I don’t think I’ve mentioned before that I’ve been having trouble sitting up in bed for any length of time. before I know it I’m all the way on my back. My left leg really serves me here. I park my power chair close and midway up the bed. I brace myself with my foot on it and push myself back up. I have a body pillow to put in front of my sit bones and I can pretty much keep myself up on my own. Sometimes I get in a situation and can use a little help from my husband. The things that cause me the most problems are my weak core muscles and my rear deltoid muscles. These are what cause me to slide down and have such a hard time getting back up with my arms. So thankful for that left leg and the improved and prolonged strength the procedure gave me. There is no doubt in my mind I’ve been given better and longer quality of life because of being in this trial. I’m so thankful! I’m also thrilled to learn there will be a phase 2b trial coming right on the heels of this. I can’t wait for the official report for this trial and really excited about the next with more than twice the patients to have the opportunity to benefit and prove the efficacy of what I now refer to, from my experience, an actual treatment for ALS. There will be hurdles to overcome with it being an invasive surgery instead of a pill. It can be done. I thank the phase 1 participants for being willing to take this first ever risk. With some of the fear of the unknown taken away, I’ll forever be grateful to be in phase II.

I also want to share something from a long distance friend of mine, Tony Bray. A few years ago he decided he wanted to do something for his own health. He chose swimming the Solent on the Isle of Wight, He also wanted to do it for charity. He has a close friend who I also know online and consider a friend starting because we have something in common, MND/ALS. After considering a few charities, it soon became a no brainer for Tony to make this swim for his good friend and to bring awareness and raise money for this often very misunderstood terminal illness, MND/ALS. He started training witch is no simple feat. The Solent can have strong currents and it’s a major shipping route for passengers, freight and military vessels. The early years of this annual event has helped Tony live a healthier life and every year his team has grown. It is now officially, The Ian Pratt MND Challenge. At least 21 swimmers took the challenge this year and I expect it to continually grow. This year he and the other swimmers as well as the great safety crew wore awareness bracelets in honor of those who are no long with us, MND Angels, and for us still here fighting this battle, MND Warriors. Tony wore my bracelet all the way across. He told me he used the bracelets on his arm and thought of us as inspiration during the hard times. I’m by far a sappy person, but this means a lot to me. We’ve all had our bracelets worn during the swim  and our swimming the Solent accompanying certificate mailed to us as seen below. I’ll always keep and cherish mine. A huge thank you to Tony, the other swimmers, kayakers and all support crew for taking on this challenge to raise money and awareness for all of us. This goes way beyond the Isle of wight and on to a global event. Thank you all!

 

I’ve been slacking a bit on my range of motion exercises. ALS never takes a break and we can’t either. I’m off and on to them now.

 

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

Until next time, take care.

April

900 Words To Say I Can’t Blog

I’ve been having a very difficult time getting a post out. I’ve also found it difficult to reply to comments. It’s been very frustrating because it’s something I have found a lot of comfort in as well as strength and motivation. Looking at the big picture, I guess it’s not so bad. I began this with the intention of continuing to the end. That hasn’t changed, and I believe I have a lot more time left.

I used to sit at my computer and let the words flow onto the screen, but lately I end up staring at my monitor while words elude me. I used to feel comfort in sharing with my readers on my public forum and privately. It’s great on both ends to know another person really understands. I have spoken with a few people who have told me they have experienced this same feeling as a blogger and it will end. That has been comforting to know. I’m waiting. I have so much more to say.

I do want to say to people who have reached out to me and haven’t received a response that I will do my best to get back to everyone. I appreciate people sticking it out with me. I’ve had many people say they’ve felt comforted over something they can relate to. The feelings are mutual and I don’t want to lose that, or not respond to a person who having a response may change their day for the better. No matter the progression, we are all in this scary situation together and need each other.

I’m still living in my home, meaning I’m still in the den. The clutter is building daily it seems. My husband is juggling everything and as much as I know he tries, I feel like the house is not clean enough for showings. I dwell on that, I’m sure, too much. I try to just dust and organize my cluttered shelving beside me and it ends up a crazy mess. I know moving won’t solve everything, but we are very cramped down here and even though I make it in, the door framing to the bathroom looks horrible. The outdated sink in there is horrible for me to try and wash my face and brush teeth. The mini-bar sink in the den is impossible to get to. I do have a table in the nook I can pull up to and use my lighted mirror for make-up. My husband still has his office upstairs but also has a computer down here for work with a very large monitor all sitting on the bar that I often come close to knocking off. It’s slow moving to get to the bathroom. Ok, that was more complaining than updating. It still felt good. Maybe this will get me back in the saddle.

That reminds me, we had planned to go on a horse ride at a nearby stable on a guided, beaten path with well taken care of horses. I was looking forward to it, but was advised not to do it at my last Emory visit.  I feel like things are getting away from me. I’m starting to miss opportunities and that scares me. After thinking about it, the advice was right. I have weak core muscles and it could be bad if I fell off, even a very gentle riding horse, and getting on is probably nothing like the last time I mounted a horse. Sometimes it’s hard to know your own weaknesses with ALS. It’s very sneaky. Also I mentioned a surgery a couple of posts back. I thought I was approved but waiting on appeal. Should know soon. I will be very devastated if I’m unable to get this. It will improve the quality of the rest of my life with ALS.

Glancing at what I’ve written, I do have a lot of personal stresses going on as well as many more private things not mentioned. Even though this has been the case since the start, I think it’s a factor in my writing difficulty now. ALS has a way of making even a minor upset a huge ordeal.

I’m still holding strong with improvements from my stem cell surgery. For those who may be reading for the first time, I’m in the phase ll Neuralstem trial and received 20 cervical injections equaling 4000,000 stem cells. I’m coming up on nine months post surgery. I don’t feel like I’m continuing to improve at this point, but I feel I’m holding very steady with the gains I had. If you read back or are a regular reader you know I had some impressive results. Sometimes I want to say my right wrist strength is deteriorating some, but then again I use it much more so it may just be tiring more. The most frustrating thing is I had a huge surprise with increase in leg strength. I can push harder against my husband during range of motion exercises, but still can’t walk. They don’t feel as strong when I’m standing and have my weight on them. My feet, ankles and knees hurt badly for the very short distance that I do walk daily using a walker. Actually my legs as a whole ache a lot, my right front quad still cramps up and is really painful. I hear too often ALS is painless. That has not been the case for me.

I’m going to stop here. Wow! It took me well over 900 words to say I can’t write anything. I hope this means I’ll be back as usual very soon.

A big thank you to my followers for sticking it out with me, and thank you to my new subscribers who have stayed with no new posts.

 

PLEASE VISIT MY WEBSITE AT

http://www.thealsexpress.com

Until next time, take care.

April

What Has Taken Me By Surprise

Today I feel great except for a little soreness from using my upper muscles more than usual. I am not complaining. This is an unusual  thing about having more strength from my surgery. It’s there, but when I us it too much, which isn’t hard to do, I’m very sore. I can live with it though, trust me.
There are a several stem cell treatments going on right now. To clarify, I’m in the Neuralstem, open label, phase II safety and dose escalation trial. I received 4,000,000 stem cells directly into my cervical spinal cord. This is the best place as far as survival because the hope is it affects the diaphragm muscles which keeps you breathing on your own if they have improved strength. My breathing has improved some.

I want to share something new. I’ve been taken by surprise by  my leg strength improvement. This has shown true by testing, it’s certainly not just a feeling. I wasn’t expecting this great benefit. I walk some with my walker during my daily range of motion exercises, but no easy stroll by any means, also a short distance. My right leg especially has been very weak leaving me to  compensate with upper body strength, mainly left side, It hasn’t come easy or wasn’t safe for any real distance. The leg strength came on very unexpectedly. Oddly, what I’ve experienced so far with my new found leg strength is I still can’t walk right, or for any real distance. I still do it with my daily exercises, however, I don’t use my walker. Tony is usually right by my side. Don’t get me wrong, I have nothing on Frankenstein. I’ve said before about the strength in other areas. It feels different, not my old self. I have to compensate for the changes.

My right toes are somewhat curled under, which doesn’t help. I have dropfoot on the right side and I can lift my foot slightly more. I can easily see breaking them trying to walk barefoot. I don’t need that so it’s shoes with this exercise. It also doesn’t take much for the fatigue to hit my legs and they are back to baseline weak and they ache, so I’m careful not to overwork them right now in fear of losing what I’ve gained. Since surgery, even before I noticed they were both stronger, they ache. That’s the only way I know to describe it. With or without exertion, they ache a lot. I like to think this is them improving, but that is absolutely not a certainty at this time, just a hope, and a hope they continue gaining strength.

I’m far from taking jogs but the stem cells injected into my cervical spinal cord have also had a completely unexpected affect on my legs. At this point I don’t see it turning into me walking out and about on my own, but it does give me the benefit of moving them and longer ability to bear weight and transfer on my own. Longer independence in any way with ALS is a huge benefit.

I have hope for all clinical trials for ALS right now, but with my experience in what I’m participating in, I stand firm in my belief that these particular stem cells are going to be our first truly beneficial treatment. I think there will need to be an easier and less invasive way to get the stem cells in the spinal cord for it to be an option for the masses. There also needs to be time to see how long the benefits last, as well as other things that need to be better understood before it’s predictable for each individual. Of course that’s the job for the great researchers, and they’re getting closer. I also still believe we need to hurry! Until there’s a better way to deliver and even be positive on who will benefit the most, anyone who passes the inclusion criteria should be able to have access to this surgery. I am not the only person to have proven changes. With that information, I think it’s a terrible injustice to tell a person they will have to wait. This is likely to result in leaving their loved ones to mourn their death while watching and hearing of others benefiting.

It is possible, and they will and should be informed they may not benefit in any significant way at all, and can even be harmed or die. This is still a very new surgery and the first to go into the gray matter of the spinal cord. Nothing to be taken lightly. Having ALS affects the benefit to risk for many patients and they should still have the right to try if they so choose.

Until next time, take care.

April

Oh Snap!

Most people snap their fingers without thought and don’t lose the ability. If the ability is lost due to a disease like ALS, it doesn’t return. I lost that ability because of weakened muscles in my right hand. Hey ALS: I can do it again – Oh Snap! I could still snap my left side but it was getting more difficult before surgery. Now my left hand is almost as good as before ALS. Every new little discovery of something I get back is like a magical moment for me.

Sometimes I think back to before surgery. My husband and I discussed it quite a bit. The risks and just how invasive it is. In my mind I always knew I would go forward with it. When you have ALS, it’s hard to turn anything down, because you know what’s ahead. Looking back before surgery, when I was constantly being told of the risks, including waking up completely paralyzed or possibly not wake up, it’s easier to think, wow, I had no hesitation? Having this offered for any other condition, I would have passed. I wasn’t about to let any opportunity against this disease pass me by and I’m so glad I didn’t let it pass as well as thankful for being lucky enough to have the choice.

I hope more than once daily that this study gets the go ahead to be sped up and approved for more people to be injected. Every surgery is a risk and as invasive and groundbreaking as this surgery is, it has proven to be as safe. I don’t know how everyone has done with it, but I know I’m not the only one who has experienced great success from it that began in phase l. I think we need to have more people injected to have more solid proof of safety and efficacy. The sooner that’s done, more people will have this option. We’ll then need to keep observing, as now, how long the benefits last, who benefited the most and why. I hope the FDA feels the same by the time phase ll is over. We need to move right on into phase lll with a larger amount of patients.

There are other stem cell studies going on for ALS at this time and I wish them great success. The study I’m in by Neuralstem inc. uses spinal cord-derived neural stem cells, the right type of stem cells needed for us as it has proven correct in my experience. These stem cells get right to work with the job needed to make our muscles connect again with orders. That’s what happens with ALS. Motor neurons progressively degenerate until their death. At this point there is nothing sending the message to the muscles to move so they atrophy and eventually become completely useless leaving us paralyzed.

These stem cells are the only thing that have been injected directly into the gray matter of the spinal cord, ever. It was a scary risk to take, but with ALS risk has a new meaning. I’m just so glad Neuralstem took the time and work involved to initiate the study in the best way. I’m thankful for my neurologist, Dr. Glass, for his research and offering this new procedure to his patients, receiving the stem cells and preparing them at the right moment for delivery in the operating room for each injection the neurosurgeon, Dr. Boulis made. I’m also thankful for the phase l patients willing to be the first while being told how it’s only for safety testing and nothing close to this has ever been performed. Knowing the risks and going on the front lines, that’s bravery! It was risky and scary for patients and  everyone who took the risk going to this new place with and for us. I’ll always be thankful to everyone involved in taking the first steps in this. It’s been a long journey. One with great rewards.

Am I as I was before surgery? No, but if I stayed here, even if just with my upper body and breathing, I can certainly continue to adapt to this. There is no doubt I’ve been set back to earlier progression. I’m coming up on six months after surgery and just discovered my returned finger snapping ability, so there’s no doubt it was worth it to me. Lets work fast on giving everyone the opportunity I’ve had. It may not seem that important for me to have the strength and control to snap my fingers again. It takes more than you think and the fact that I couldn’t do it before means I’ve had a lot of improvement involving several muscles. Many daily activities were becoming much more difficult and it was only getting worse before my stem cell implantation surgery. It really is much bigger of an improvement than it first seems.

I’ve gone on enough about my results. It’s bitter-sweet posting about it. I know you all facing ALS want to be happy with me and others known to benefit. I also know you and your loved ones naturally wish it was happening to you right now. I feel the need to apologize, but inside I know that’s not what you want, and I know many of you appreciate the experience coming from a patients perspective. I thank you all for reading, and allowing me to tell about it as much, if not more, than you appreciate reading it. Thank you to all my readers facing this terrible disease and sending me encouragement. I truly believe we’re in this together and never forget, we’re stronger in numbers and that means a lot when we need to band together for something we all believe in. I have a feeling this study will be continued rightly and swiftly, I’m on the team if we need to make sure the FDA hears us in the States. I’m on the global ALS team as well.

I’m coming up on six months post surgery and with that I have another surgery coming up. It’s not ALS related so I wasn’t going to mention it. It does affect my life with ALS so I’m choosing to share it. My treating neurologist has given his approval understanding it is truly a quality of life issue for me. I don’t need to take any risks waiting. There will still be extra precautions taken for the surgery since I do have ALS. It won’t be a non-hospital, walk out surgery. I have a very competent surgeon and it will be performed in a hospital. I planned to bring it up in my next post but now I can’t just leave you hanging. I have a couple of things I need to get off of my chest – literally. Shortly after my next Emory appointment coming up soon, I’ll be having breast reduction surgery. So I brought it up in this post. I’ll tell you more about how it all came to be next time. This is not an, I want this surgery for cosmetic reasons. It will improve my daily life now and certainly in the future. If you look at my photos page, you will see some of me at about 100 lbs. My breasts may not look large there. Even then I went to great measures to strap them in. I’m larger there than I look. This is all for another post.

I’ll probably update several things I haven’t lately since I’ve been so focused on my stem cell results. I will still mention any changes that I notice since surgery, anything. It’s all important.

Just a few days ago, 3/28, made one year having my blog which was one year after my local neurologist told me about ALS after an EMG and sent me for confirmation with neurologists specializing in ALS. One was Emory ALS Center, where I chose to stay. One of the best choices of my life. If you haven’t already, please read about my experience being diagnosed with ALS. You can find it under, About Me/My Diagnosis Experience.

Thank you for taking the time to read my blog. I will be back with more.

Until next time, take care,

April

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,

April

My Feelings

 

I need to let out some feelings I’ve been dealing with. I’m just going to let loose. Any writing order out the window. I’m writing my feelings, my thoughts as they come to me right now. Just go with me, please.

I was very lucky to have my neurologist offer me the opportunity to participate in the Neuralstem, stem cell study. Even better, I’ve experienced really positive results from it. One would think, including myself, that I would have nothing but overwhelming joy 24/7. I mean if there is something to feel great about, it’s benefiting from a clinical study for ALS. Something that researchers and patients have hoped and dreamed about for well over a century, to no avail.

I am overwhelmed and grateful for what I’ve been given. It can also be overwhelming in other ways too. I don’t feel I have the right to complain or have a bad day. when I do, I feel very guilty. I see a person who has ALS with a young child and think I don’t deserve this, they should have this so they can be with their child longer. I’m sure my own adult children don’t agree. There are many adult milestones to come. I do want to be there for them. Go ahead, do the math. I had children at a young age, I’m from the south, I fit into a few stereotypes. You can underestimate my intelligence if you like.

I get angry at myself for not feeling positive every second. Then I tell myself I haven’t been cured, I can’t be and do everything I could before ALS. It’s OK to be upset that I still have this terminal illness. It  Doesn’t work. I get angry that I’m in a wheelchair for almost any trip out. I want to walk, I want to run. Now here is the real kicker and the one I get most angry at myself for. I feel so damn ugly and fat. I guess I had put more importance on that than I like to think I did. This one really brings on the guilt. Not to mention, I shouldn’t be really focused on that so much even if I didn’t have ALS. I’m 41 not 21, almost 42 and I have a husband who loves me no matter what. Again, I think how dare I have these feelings, when so many would never be focused on looks or any petty thing.

Some people don’t even acknowledge me. I was in line with my husband the other day and a woman said to him, she has very pretty hair. What the hell? I had been talking to him intelligently, handling my bag and other items. So does being in a chair mean to this woman that I’m not worthy of speaking directly to, or does she think wheelchair equals idiot? I never acted like that  to a person in a chair.

I don’t like the stares and situations I mentioned. I think back to not long ago when all I wanted was to have the wheelchair accessible van so getting out would be so much easier. I haven’t had it that long and I’m already complaining over a couple of incidences that infuriated me when I should just let it go and experience how great it is having more freedom. Believe me, it has been great. So why let little things like that upset me? It brings me back to, I don’t deserve this mode. Then I see other people with ALS who are always so damn positive. But really, are they that positive behind closed doors?

I saw a man on TV this past Sunday with ALS. His dream, after being diagnosed with ALS is to hand out doughnuts to children. He said he was happy that ALS gave him this new perspective on life that he otherwise wouldn’t have. It showed him documenting other people who have found this silver lining from having this disease.  They were glad they had it so they could experience this awakening. It was on the television show, Sunday Morning. The man is from, I believe, South Carolina. Get in touch with me if you read this and know him, or if you are him. I’d like to understand this mindset. It seems inconceivable to me knowing that ALS is an extremely horrible way to go.

I have mentioned positive aspects of the way I am progressing. There are advantages to having one whole side much better than the other for several reasons including the ability to transfer easier, I feel positive about the amazing results I’m experiencing from the study. I have never felt positive about having been diagnosed with ALS, or had any great awakening. In keeping with being honest, I’m asking myself what is wrong with these people? Lying, crazy, in denial? I really want to know.

I’ve written some of my feelings. I don’t feel angry everyday. I’m extremely appreciative of many things, and I do have fun any chance I get. I feel happy, lucky and encouraged by the changes I’ve experienced resulting from the study. I still haven’t mentioned it all yet, there is more. I am part of something huge in the future of treating ALS. I will feel great when it’s available to all. I just need to express the other side of my feelings and life with ALS in this post.

I’ve also had a lot of wonderful messages from people with ALS and caregivers, I appreciate this so much. It’s part of the fuel that keeps me going, keeps me fighting. I still do not see the silver lining, feel a great awakening, or feel happy that I have ALS. I just don’t. I’m glad these people can feel that way, they are lucky. I can never say I feel lucky seeing the world from a death by ALS perspective. I would not be telling the truth, and I don’t get it.

I’m baring a little of my soul here. Some may find my feelings selfish, feel anger towards me, or maybe feel it made sense in a way. I just needed to let it out, and this is where I do it. As I say on my home page, I’m not here to sugarcoat what I’m dealing with. However, whether I’m happy, sad or mad, I am always 100% in the fight or us all.

Thanks for reading about my inner thoughts and some demons I wrestle with.

Until next time, take care,

April

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

Wheelchair Accessible Van

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 gofundme.com 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!