“Every disease has its first survivor, why can’t it be me!” — Sarah Nauser Olsen
If you are like me, the last time ALS was on your radar, it was related to the passing of a celebrity, or the big headliner, THE ALS ICE BUCKET CHALLENGE. On 05-31-2018 ALS suddenly became much more personal to the all of us. Im sure many of us experienced the same initial gut wrenching feeling, it hit like a ton of bricks, but these bricks were different…more painful, more personal, more deep than anything I had ever experienced. But after dealing with those initial feelings as much as that’s possible, you begin to ask yourself “Alright, what can and do I need to do to help Sarah?”. I am no expert on the subject of ALS, but I assume as most did that are reading this, you educated and digested as much as possible on this disease. For those that haven’t, ALS is also known as Lou Gehrig’s Disease, or Motor Neuron Disease (MRN). Briefly into my readings, I realized for the PALS (person w/ ALS), the number one order of business does not come from our pocket book, but from within ourselves, and the good lord above. No matter how hard things become we must stick together, and above all else STAY POSITIVE in the process! In my estimation, 99% of patients that ultimately received a positive ALS diagnosis (Dx), attributed the power of positivity and prayer to not only a better quality of life, but many PALS believe when those around them remained positive throughout the term of care, they lived a longer post Dx life! The will to live is powerful, and lets not ever forget that! POSITIVITY, ALWAYS FRONT AND CENTER!
Out of respect for Sarah’s privacy, as of right now this “blog” should only be shared with your eyes, which includes family and close friends of Sarah’s choosing. I may refer to us as a group at times being Sarah’s ARMY, an organized force of #SarahsSoldiers equipped for fighting together! Anyone reading this is one of #SarahsSoldiers fighting ALS alongside her in one way or another. Being her closest companions and confidents although, we need to be warriors. Warriors are of the utmost bravery, and a more experienced fighter than a soldier. Warriors only surround themselves with other warriors, and I know what my sister is made of….she is a warrior!
I plan to try and update the blog every couple weeks and after visits to KU. It looks as though about every 3 months she will see the full staff in the Neurology Dept. If there is any concerning developments as we move along, I will try to update ASAP with as much info as possible. Bare with me please, as the blog world is all new to me, and I’ve certainly never tried to tackle anything of this nature. It does seem as though the easiest route to keep everyone as up to date as possible. Sarah and Lindsey also have admin accounts to share as they please! This initial “blog” is probably much longer than any in the future, but never say never! Please do not hesitate one bit to reach out with any thoughts or ideas….Most of you have my phone number, but if not its 573-639-2329-. Im not as responsive to email, but getting better! That is firstname.lastname@example.org.
Sarah’s attitude from the very beginning has been nothing short of outstanding. I’m sure those of you that have FB or have come in contact via other medians can attest. She is a Nauser, so we know she is stubborn and will fight with all she has got. Her resolve is simply amazing. I myself am constantly taking mental notes of her actions, she’s living the right way!:) Following her initial Dx at the University of Kansas (BOOOOOO) Medical Centers, Neurology Dept., she has since had her first follow up appointment 06-11-2018 as a PALS. From my understanding the first appointment is kind of a meet and greet, with somewhat of a workshop. I was not present at this appt, my mother Jamie and sister Lindsey accompanied her. I do know she was given a resources book from the ALS Mid America Chapter, and she met with numerous professionals that will be assisting at different times in her care. Aside from the Docs, Sarah has a physical therapist, respiratory therapist, and occupational therapist all within the Neurology Dept at KU Med. She also has a speech pathologist, dietician, and a social worker available to her as needed.
As we progress there will be challenges faced that don’t always pan out the way we would like. I’ve learned real quick, that doesn’t necessarily mean give up hope if things don’t go our way on whatever it may be. I will give and example shortly. The Ice Bucket Challenge was extremely successful fundraiser that has brought numerous research developments to the table in a very short matter of time. Where this directly affects Sarah is through clinical research studies now being carried out. There is currently only one FDA approved drug for ALS to increase longevity of life…and its estimated to only add an average of somewhere in the ballpark of 3 months to a PALS life. But 3 months is 3 months, and quite frankly if it was only 3 days, we will all take whatever it is we can get! She did start that drug (riluzole) from day one of Dx, along with another prescription that she tells me has helped her sleeping tremendously. Sarah was hopeful going into her first appointment to participate in one particular research study that we had heard some 1st hand accounts of, with promising results (once again, only slows progression). Unfortunately Sarah did not qualify for this study based off of her Forced Vital Capacity (FVC) score she had registered earlier in the day. The FVC will not improve if an accurate reading was achieved that day. To keep it simple, the FVC is a breathing test conducted to gauge respiratory function. Its one of numerous test administered at every visit to KU Med…monitoring those test scores is the best way to try and keep a thumb on the progression of ALS in the PALS. As with all other functions diminished or lost, they do not come back nor improve.
All is not lost for future clinical trials, these decisions can be appealed and overturned at anytime. This specific study was for Radicava. As with everything else that ALS touches, there are mixed reviews and results abound! Some given the drug notice their progression speed up almost instantly. We must believe that God has the best possible path on this journey already carved out for Sarah! No Radicava, No Big Deal!! IF YOU HAVE SEEN ONE CASE OF ALS, YOU HAVE ONLY SEEN ONE CASE OF ALS. NO TWO PALS ARE EVER THE SAME. With that being said, do not be alarmed that her breathing disqualified her from any trials in the first appointment post Dx. For all we know, three years from now her FVC scores could remain the same and the disease has slowed and moved on to affect other areas. It is truly one day at a time.
Sarah did receive her first device Saturday due to her FVC score. Shes not a fan, but who would be. Its a ventilation device known as the Trilogy machine. In the coming weeks she will get more acclimated with it, but for now she has “vacations to attend to” 🙂 No one knows her body and how she feels better than herself, so in due time she will begin to use it throughout the day as needed and at night regularly. The breathing specialist was not alarmed at Sarah’s reluctance to use the machine right now, so all is well.
So speaking of those vacations!!!! She has remained extremely busy, and appears to be fairing more than well. As we speak Sarah is in Las Vegas. She let me know everything went very smoothly on the flight, after even somewhat having concerns herself of what 30,000 in the air may feel like. She also walked 5.5 miles, on very little rest, the first day they arrived with no hiccups. Experienced some soreness, but nothing more. That is wonderful news! Five and a half miles would likely make the majority of us experience some discomfort! I’m sure Sarah will log on here and fill everyone in with the finer details of her trips when she gets some down time…but keep knocking out that Bucket List girl.
Prior to Vegas, she was taken up in the KCPD helicopter to take the city in from the sky. She made my week when the low flying helicopter I heard in the distance gradually grew louder, then flew directly over me! The prior weekend Sarah joined family and friends at Pomme De Terre Lake. All the siblings have been making that trip with our Mom since Sarah was in diapers! She commented that it was very neat to be back after some years away. I know she also took in some nostalgia (Oceola Cheese Factory) and plenty of sun rays…although it was hot as Hades I hear! None the less, she had a climate controlled camper to crawl into at night, and made many more memories!
A few days after arriving back from Vegas, its to the beach we go! The Nauser bunch will all be in attendance at once for like the first time ever. We will be sure to take many photos and share as much as possible. The awesome General, aka Aunt Leslie, has arranged for a professional photographer to snap some photos on the beach, including a strict dress code. Believe it or not, I already got the green polo I was instructed to. I assume there will be a public website to purchase prints off of. I will share the link when it becomes available. Going to make some memories, “live it up”, and put a dent in the crab population!!
Switching gears one more time…back to the part where we all want to do whatever we can to help Sarah out. Thanks to a wonderful woman, Libby Powers, she hit the ground running on a GoFundMe page as soon as Sarah made her Dx public. After less than a weeks time the first goal had been eclipsed. Thanks to any of you that shared the post, and please continue to do so from time to time. Once again, thanks a bunch Libby. It is just a start though. It’s estimated that care for the average PALS is north of $200,000 a year. This is obviously something that cannot be done alone. The goal is to stay ahead of the progression with any products or services already in place before they are needed. There are a few other fundraising efforts already off the ground that I know of. Thank you to Matt and Amber Keck for putting together a comedy show with a silent auction. More details to follow on that. The KCPD has a raffle going for a firearm, with all proceeds going to Sarah. I will post a photo with information on how to purchase those tickets. Any ideas you all may have, please bring to light. I’m sure a golf tournament will eventually come as well. This cant be tackled by any of us alone, and there are scores of people wanting to help, just not sure how. Matt Taylor and Libby Powers have loads of fundraising experience and knowledge, so hit them up!!! I know we can all achieve this together, so the “financial burden” you often hear of can be non existent….and I don’t mean from your own pockets unless able. Its also pretty damn fun to get together with friends and family to raise money for such a cause. So lets put our heads together, have some fun, and make some awesome lifelong memories along the way!
Lastly we have the ALS Mid America Chapter Walk @ Kauffman Oct. 6th. From initial chats, and already established FaceBook pages, I think #SarahsSoldiers is going to have one heck of a turnout…and its still months away. I can tell you this right here means a tremendous deal to Sarah. She has that competitive blood pumping through her veins on this one. Its our goal to not only raise enough funds to earn the top team initiative, we want to be the top team overall! O yea…that’s also not good enough, she knows we can raise more funds than any team in the history of the ALS Mid America Chapter walk. Sign everyone up that you can, and make sure they show up for the celebration! I will provide sign up details closer to the time. I think its awesome that in a time like this, Sarah is not just focused on herself and Dx, but for the future PALS, with the hopes that we can find the key to UNLOCK ALS for good!
Once again, sorry its a bit lengthy, I wanted to try and get everyone up to speed as much as possible. She has a bucket list to conquer, and the young woman cant do that with a phone attached at the ear all day. So get after it Sarah, all of your soldiers are in this together, and that makes one hell of a formidable ARMY.
“Faith, hope, and love are some good things he gave us, but the greatest is love!”