My First 2014 ALS Blog

Posted: January 4, 2014 in ALS Related
Tags: , , , , , ,

The past few blogs have been progressively difficult. After deleting several long drafts I’ve decided to just sit, write and publish. I hope it comes together enough to be worth reading.

This used to be more like a public journal of my personal experiences and feelings while dealing with ALS. The stem cell surgery changed that for me in many ways and I didn’t see it coming, even though looking back, I should have.

I’m going to write a little about what I’ve been dealing with. On one hand I want to tell everyone about what I have experienced post surgery, about several changes, things I can do now that I couldn’t, at least as well before surgery. At times I have an experience of something seeming to not be as well as I first thought, but it returns right back to improvement. I think to myself the improvements I’m experiencing can’t be attributed to a placebo effect. You just can’t will or believe strong enough to reverse this condition.  I have dreams of going for the testing, the proof,  that this is really happening and in every dream I am worse than pre-surgery baseline.

There are things I still struggle with. I’m in no way meaning to send a message that I’ve been cured. I believe I’ve been given more time and quality of life. How long or if I will continue to feel more improvement is something I can’t answer. I can say before this Neuralstem study, nothing else came close to these results.

Everyone wants to walk of course, but with upper body strength it is much easier to have quality of life in a chair. The cervical spine procedure I had is really what is meant to help people live longer with the ability to breathe. I’ve known people who were still walking and driving but respiratory issues caused a faster death. ALS can be a very different journey for individuals and very similar at the same time. One may live several months to several years, and some live quite a bit longer but always progressing to the final stage of paralysis. Breathing issues is the most common way it takes a person’s life. In many cases choosing to have a tracheostomy performed can add years of life. It does come with a big emotional and financial cost.  You will need constant care. It was something I had made no decision about because it does extend your life but you keep progressing. It would have been real difficult to me if my breathing was very bad early on while still having decent abilities in other areas to make that decision.

My very first  FVC breathing test at Emory ALS clinic day was 101. I felt great about it and expected to continue for a long time. I think every time I returned it went down a little more. I started waking with headaches and  a feeling for a deep breath that would have a crackle at the end of the deepest breath I could take. I was walking with a rollator at the time also and found myself out of breath with less exertion and stopping to sit and catch my breath. After x-rays coming back clear I had a little more extensive testing at Emory. The breathing scores while on my back were low enough to qualify for needed assistance. I was lucky enough to have a Trilogy 100 ordered. I won’t get too into it now, I believe I did in the blog about my Trilogy, but it has AVAPS setting that I found much better and easier to use than the BIPAP setting. You can have two settings only at once. I chose AVAPS for mask use and for the Puff System of Ventilation for when I just need a few breaths.

Now for the news on my breathing. I haven’t used a mask in weeks. I’m very grateful for the Sip and Puff because I do still use it as needed. I have no doubt my ability to move air in and out has improved though. A part of me can’t wait to show it and it’s also one of the things I always dream about being worse.

My feelings have been pretty raw while experiencing changes and also trying not to over-focus on them. This and several other reasons have made blogging difficult for me. I hope you bare with me as I get back in the groove of regular blogs. I do have much more to say and hope others experience great results with other trials, and the others in this trial benefit like I have. I’ll be back soon as possible. Thanks for reading…

Take care,

April

 

Advertisements
Comments
  1. Hi April,
    Wishing you continued improvement in the New Year! Always look forward to reading you and am so happy to hear that your breathing is better; fantastic news!
    You are in my thoughts, all the best,
    Richard Roehl

  2. I am SO glad you are seeing improvements, April! I don’t believe it’s a placebo effect; I believe it’s genuine improvement and I hope and pray it continues!
    I have heard great things about the Trilogy machine; I would like to get one.

    • aprilals says:

      Thank you! I think of you often and those words mean a lot coming from you. Your posts so often bring a peaceful feeling to me. The last blog showing your beautiful family through the years starting with your daughters around diagnosis and seeing them grow into adults and now the new addition was great. You’re great! Congratulations again!

      As for the Trilogy 100, I love it, and as a user, I highly recommend it! I had a hard time with the BiPAP setting. The AVAPS is so much better. I never have the feeling of trying to get in sync with it. It seems to intuitively follow my breath patterns very fast and stays with me. Also, for anyone not to the point of needing constant NIV, the bendable sip and puff is very handy to have so you can take several breaths without a mask. The Trilogy weighs, I think 11 lbs, it’s small and easily mounts on the back of most if not all power chairs. The sip and puff can be on it and wrapped around close to the face for easy use. I was lucky more than anything to have this ordered. I’m so glad I didn’t have to use a Bipap setting. Something else I thought was great when it was brought to my home is being told that if I ever chose to have a tracheostomy I can keep the Trilogy. It does it all and I thought that would be helpful for anyone choosing that. It would still be your trusty Trilogy. There are many other great features I don’t understand. I just know they really are great and I so hope you can get one.

  3. Wishing you well says:

    Thank you April for sharing your progress with this treatment. I truly admire your bravery and your will to fight this disease. I’m looking forward to seeing you make more progress and become part of medical history.
    My thoughts and prayers are with you!

    • aprilals says:

      Thank you! The only thing missing is for every person with ALS to experience positive progress. I’m so thankful for myself even though it’s sometimes scary and a lot still unknown. I would just love everyone to have a change in function for however long it lasts. It couldn’t get better than that at this time. We all fight together. I appreciate your encouraging words!

  4. Joanne says:

    I am so glad to hear from you, I am glad you are seeing some improvements. what you are doing is cutting edge. I am sure you are scared, just take one day at a time if you can. i pray that love surrounds you.

    • aprilals says:

      Hi Joanne, It can feel scary and overwhelming at times, More often I’m thankful and amazed. I have lots of love from family and so many dealing with ALS. I’m very luck to have that.

  5. Jimmy Sisco says:

    Just want to say may God continue to Bless you and may your progress continue to be positive.

  6. Bob Powell says:

    Hi April,

    So glad and happy that your breathing is better.

    I’ve met two people in the last couple of months who have a wife and a daughter suffering from ALS. Of interest to me was the guy who takes care of his daughter. I asked him if she ever tried medicinal marijuana, not knowing what kind of reaction he would have. He’s my age, 66. He said until she started smoking it in the morning upon waking, she had very little control and her mind was very foggy. When she tried smoking a little of the MJ, she had relief within a very short time and is now part of her morning routine. She has much better control of her arms and walking stability.

    I am currently reading “Marijuana: Gateway to Health”. It’s loaded with links and references to worldwide neurologists and neurosurgeons who have confirmed the health benefits for ALS (and many other degenerative diseases). A few neuro-scientists have noted MJ’s unexpected side effect of stimulating new brain cells. Much research remains, but it is hopeful.

    Regardless, I wish you the very best in your clinical trial.

    Bob

    • aprilals says:

      Bob,

      I find it very interesting. I don’t live in Colorado and there is no medical marijuana law in my state. I see that changing at some point, hard to tell how long that will be as I’m sure you know. I have never heard of it stimulating brain cells. When it’s noted to improve motor neuron survival and function, I’m in no matter where I am!

      Thank you for the informative comment and well wishes.

      April

  7. Kamaren says:

    I just started reading this today, and read every blog in one sitting. I am an ER Nurse and just shared it with the other staff around me. We are all in awe right now. We have seen first hand how horrible this disease can be, and to hear about such great progress is amazing. Thank you for blogging about this. I will continue to follow your progress. Praying for your continued improvement!

    • aprilals says:

      In one sitting? Thank you for reading and for sharing my story. There is a lot there about me and ALS other than post surgery, even before I thought I’d ever have this opportunity. I do hope I continue with positive progress and that it lasts. Right now, only time will tell. You have seen the destruction of this disease and the helplessness that comes with it. We are at the beginning of seeing that change. I hope it won’t be too long before you see it in a patient. Thank you for following me and lets keep hoping this process speeds up and continues to help me and all ALS patients. April

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s