My First 2014 ALS Blog

Post 13 of 84

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

 


 

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April

This article was written by April

8 comments:

wjonesmaineJanuary 6, 2014 at 1:16 pmReply

We are praying for you April, you are very courageous.

April AprilJanuary 8, 2014 at 10:26 pmReply

Thank you very much.
April

rmcmanus003January 7, 2014 at 11:07 amReply

Hi April,

Thank you thank you on behalf of all ALS families and patients ( We lost my younger brother Thanksgiving Day 2007) for having the courage to write this blog! It sounds like you may be having some positive developments related to your surgery which hopefully will continue and be confirmed by the trial. An army of folks out there are rooting for you and all the others in this trial Hang in there and thank you thank you for this wonderful unselfish gift and your honesty and care in how you share your story. I’m sure its really tough for you–so please know you are doing something incredibly valuable. God Bless you April… Rich from DC

April AprilJanuary 8, 2014 at 11:17 pmReply

Rich,

I’m sorry you lost your younger brother to this illness. I think there should have been a treatment/cure available long before he lost his life. It’s a shame we are just now coming to the point of real hope to treat this illness that’s been around for so long. I believe it’s finally in the foreseeable future. Thank you for the compliments on how I’m sharing my story. It’s something I think a lot about and finding the balance isn’t always easy. Comments like this have given me courage to write many times when I’m struggling for the right way.
Thanks again and take care.

April

SandraHawthornJanuary 7, 2014 at 4:04 pmReply

April,

We are so glad to hear you are getting better and breathing better! It’s a function we all seem to take for granted until we find it not there anymore or worse. I hope it at least feels good awaking from the bad dreams and realizing that they were just dreams and in reality you’re improving. We wish you the best of luck and health and much love.

Xo,

Sandra

April AprilJanuary 8, 2014 at 10:53 pmReply

Sandra,

Breathing is easy to take for granted. I do believe I have improved in this area, even though it’s not 100% my old self. Any improvement is astonishing when when it comes to ALS. Reality supersedes the dreams!

Take care,

April

7thwavepicsJanuary 10, 2014 at 11:07 amReply

I am so happy for all the positives that you are getting. You are also mentally, emotionally more positive now. With ALS you know how it all ends and you were preparing for that. Now you have this groundbreaking surgery and while the outcome is somewhat unknown you are headed in a better direction.

Not only are you doing better but there is also so much to gain on a treatment or possible cure for ALS. You participating in this study should not be taken for granted either. It was not easy and many people in the same situation decided against it. I applaud you for all you do for ALS!

It was great seeing you and Tony before the holidays. Hope to see you both sometime soon!

Matt

April AprilJanuary 10, 2014 at 11:25 pmReply

Thank you Matt, you summed it up well. There I was doing my best to accept my new reality and deal with it. I chose staying busy participating in any research I qualified for, preparing my message for my family after my death which I haven’t touched since before surgery, keeping busy with my blog and of course documenting my life with ALS from one year in until my death to help spread awareness and show what course it took with me.
Then, bam! I’m in the middle of pre-testing, then accepted to participate in the Neuralstem phase II study. Then double bam! I feel results very early after surgery. I’ve struggled with who, what and when to tell. I don’t think this part would be such a struggle if I didn’t already have an established blog that I have always been open and honest with and built trust with followers, sharing support and any new ALS news we had.
I had some news very early. It changed the dynamics of how I blogged and I really wanted to tell. I’ve certainly been there, wanting information on how or if someone had reacted to other trials so I didn’t want to leave them hanging, but I didn’t want to go too far either. It’s still a tough balance but I get a lot back from people, especially people dealing with ALS. A lot of support.

With you filming from the beginning of the documentary, you have an inside look at how I am, as well as Tony. Knowing you, I know your comments are genuine. Thank you.

We enjoyed having you before the holidays as well and it’s time to get back together. We always look forward to having you around even when we don’t acknowledge you and sometimes forget you’re there. You’re great at what you do and have become a trusted friend.
See you soon.

April

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