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 The outdated sink in there is horrible for me to try and wash my face and brush teeth.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 4,000,000 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.
Until next time, take care.
The blog was posted originally on June 23, 2014.
About the Author
My name is April Moundzouris, and I was diagnosed with ALS on March 28, 2012, when I was 39 years old. I recently started a website, The ALS Express, which contains easy-to-find information for those recently diagnosed with ALS. The site also houses my personal blog (also posted as April's ALS Blog at WordPress). My site is very straightforward regarding my life with ALS and may offend some. However, that's not my intention. If I can help one person newly diagnosed with this horrible disease better understand how to adapt to their ever-changing condition, then I have a feeling of accomplishment. If you get a chance, please visit my site. Please also visit The ALS Express on Facebook, a fan page that my husband set up and maintains.
Lastly, thanks to everyone helping to spread awareness about ALS. A cure or at least a treatment is way past due.