I won’t Stop Fighting.

Posted: January 31, 2014 in ALS Related
Tags: , , , , , ,

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

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Comments
  1. Darrell Volentine says:

    im pulling for you friend,do you feel stronger than you did before the stem cell surgery? Date: Fri, 31 Jan 2014 01:54:53 +0000 To: darrell-v@hotmail.com

  2. Robert Anderson says:

    Beyond inspired by your story! Think about you often. Sending you positive energy.

  3. Brian W says:

    Hi April,
    I just stumbled upon your blog. In March of 2013 I was diagnosed with ALS. Like you, I did all I could to find out about it and participate in any and all clinical trials. I, like you,, was fortunate enough to be accepted into the phase II stem cell clinical trial for persons with ALS. My surgery occurred on January 8, 2014 at the University of Michigan -cohort ‘c’. It has been a little over 3 weeks. My neck feels a little better every day. There is still some pain but it is not too bad. My ALS symptoms have stayed the same or have gotten slightly worse. I am curious as to what I can expect to look forward to as you are 2-3 months ahead of me.
    – Brian

    • aprilals says:

      Hi Brian,
      First of all, thank you for participating in trials, it’s the only we will ever find a treatment. I say this, but I also have no hard feelings toward people who choose not to and focus on family or what is important to them while they still can. My heart goes out to you when you say your symptoms have stayed the same or are slightly worse. The first thing I want to say is it was not expected at all for me to feel the positive things I have so soon after surgery. It’s expected to take much longer. Please keep that in mind. I have no way of knowing what to tell you to expect, especially since we’ve already had much different experiences. Being 3 weeks out is still early for this major surgery and you’re not fully out of that process. I can only suggest you focus on getting through the full recovery first. I will be thinking of you daily and I really hope this turns around for you in time. Remember, you have the support of so many. Please take care of yourself and feel free to contact me any time. Best of wishes to you.
      April

  4. Hi April,
    Thanks for the blogs and the pictures of the van (looks pretty cool). As always great to hear from you. you are in my thoughts and I’m looking forward to your Emory test results! Take care and drive safely lol. Richard

  5. Hi April,
    Always an exciting day for me when you put out a blog. Like your cool van! (was expecting something more ‘medical’). Thanks for the update; you are in my thoughts – looking forward to you having great tests results at Emory. All the best, Richard

    • aprilals says:

      Thank you, I was expecting something more like a van that transfers prisoners early on. I was happy to learn it can be an every day van. I’m very happy with it. I’m so ready for testing at Emory myself! Take care.
      April

  6. So inspirational. I wholeheartedly agree with your hope.

  7. adam lloyd beckerman says:

    You are a courageous woman, April. I will follow your story and root you on from NYC. I wish you strength and peace as you go about your battle with the inspired and committed doctors and your beloved family members by your side. God bless you.

    ALB

  8. Mike says:

    Hello, I am sorry about your fight with ALS. I am a son of a person with ALS. I wanted to do something about ALS for him and for others like him. However, I need help, and I want to make sure that others like my father are interested in this project.
    Please visit ALSFight.com and feel free to provide feedback.
    Thank you.

    • aprilals says:

      I think it’s a great idea and site. I’m sure your Father is proud. I can’t help financially at this time but I will raise awareness whenever possible.

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