Monday, February 3, 2020

Monday Mumbles: Welcome back to blogging!

It's been a long time since I have sat down and updated my blog. Honestly, I have missed blogging. I find it therapeutic and I just enjoy passing along things that might be able to help someone else. If any of you have read my past blogs you know I love writing about ways to save money, living frugally, giving praise to our Lord, and my family. My family is really what prompted me to come back to blogging. So much has changed in our lives this past year and as I was trying to find someone that was experiencing the same life journey we were now put on, I didn't find a whole lot of  blogs, vlogs, and very few forums. As a result, my husband and I were encouraged to come back to vlogging and share a new journey the Lord has placed us on. Hopefully, these new blogs can help someone or other families.

So let's start with our girls. My goodness, our Chickaroos have grown. We are now parents of a 10 and 14-year-old!!! That sweet little toddler that was center of so many of my earlier blogs will now be 14. Like other 14-year-olds she is excited about starting high school next year and will be in the 10th grade. She's a bit nervous about getting her learner's permit, but excited as well. Our oldest has a diagnosis of Autism (Asperger's) with Sensory Processing Disorder. I have to say she has overcome so many obstacles and loves to help others on the spectrum. She has a special heart for equality for others and now getting into politics. I love hearing her view on current events and she is always up for a good civil debate. Our youngest is now 10 and we can not believe our baby has hit double digits. She is now a 5th grader and loves Art. She can draw for hours at a time and creates so many new characters with great backstories. She's also a huge fan of astronomy and loves to devour any book or video she can on space. We recently gave her a gift of a telescope and it's become a fast favorite hobby of hers.

I'm still staying at home taking care of my little crew. This year I realized more than ever why the Lord called me to stay at home and take care of my family. Last year Barry was having some issues with his back. We began to fear that he would need back surgery, only it wasn't something that was fixable by surgery. Something we thought was minor became something life-changing and incurable. One of Barry's colleagues at the hospital saw him limping in the hallway. By this point he was having foot drop and his colleague is a Neurologist. He had Barry perform some simple, for most people, movements and he was so concerned he had Barry come in on a Saturday for an EMG. It was at this EMG he told us he thought Barry had ALS. Our world was literally flipped upside down. How can something that we thought was a slipped disc become something that was life-threatening? The months that followed from this Saturday brought on more EMGs, muscle biopsy, spinal tap, MRIs, and trips to our state's ALS clinic. In the end, there was no denervation on the EMGs or in the biopsy after all other possibilities were ruled out a diagnosis of Motor Neuron Disease was given. Barry has PLS which is Primary Lateral Sclerosis. Think ALS is rare and PLS is even rarer. With ALS a typical life span can be 2-4 years. With PLS it can be up to 15 (this is by textbook standards), we have since met many fellow MND brothers/sisters that are living 25 years out from diagnosis and some may not experience all of the typical symptoms. PLS is essentially a slower form of ALS. Many if not all of the things that happen with ALS will happen with PLS patients, but at a slower rate. Eventually, most will be unable to walk, talk, eat, breathe on their on, etc. Cognitively MND patients have no issues.

I know you will be shocked at my next words, but Barry and I praise the good Lord daily for PLS. We have time and a lot of MND patients do not have this luxury. We pray that Barry will be among those that are 25 years out and still giving his testimony and encouraging others. Last year he could walk and this year he can walk a bit with help from a cane or rollator. If we go out anywhere for a lengthy amount of times he does need his motorized wheelchair. His legs and arms are getting weak. We give praise daily that he has no bulbar symptoms, these would be breathing, talking, and eating. Barry always says he can handle everything else PLS throws at him but there are two things in this life he loves...that's eating and running his mouth. He hopes he doesn't lose those abilities.

As a result of his diagnosis, he has to medically retire from the hospital as an MRI technologist. He has worked at the same hospital for over 20 years and it was hard on him. His coworkers are like family to us and we are so grateful for their support through that difficult time. Being that he does have MND we were extremely fortunate he was able to gain disability under the compassionate allowance act and he was able to acquire that within three months after retiring.

I hope to tell more of our story and hope it may help another family that is either going through MND or a similar journey. When we were first starting on our path, since PLS is so rare there were not many places we could turn to on the internet for encouragement. I hope we can be an encouragement to someone out there.

Fast forward to today. We have adjusted extremely well and we have come so much stronger as a family unit. MND really tried to rip our life apart, but it really made our bond and Faith stronger. It showed us what really matters in life and we tend to let the small stuff slide now. Last year I started looking into drug trials for Barry and praying that I would be able to find one for him. I was able to find one and unfortunately, we were denied for the trial last year. I told him that the Lord put that particular trial on my heart and I felt like he was going to get approved when we reapplied, sure enough, he was accepted and we just got back from our first visit. It's going to be interesting as we have to go every 2 weeks for 6 weeks four hours away and stay overnight. Then it will go to once a month for about five months. We would not be able to do this without the help of Barry's parents. They are taking care of our girls and doing school runs on those days. Barry will be trying out an MS drug and they will see how PLS patients do on the drug during the drug trial. What's wonderful about this is, this drug is already FDA approved for MS and if it works, Barry has an option of continuing use of the drug if his current neurologist is on board with prescribing it. We think he will have no issue doing so. At that point, it will be more of a cost issue from insurance than anything else, as we will be receiving the drug for free during the trial.

So there's our update. I hope to blog more in the future and hopefully, someone will find my words encouraging. I hope everyone has a wonderful start to your week. Leave me a comment let me know how your week is going or if you may need prayer. Have a question about anything in our above blog? Ask away. We love to help get the word out about Motor Neuron Disease and Autism awareness.

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