Katie Adams: Living with ALS, In Her Own Words

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By Katie Adams

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My name is Katie Adams. I am a 39-year-old mother of two girls, ages 9 and 14. We are from Henderson, KY. I worked as an occupational therapist and rehab manager up until the day I was diagnosed. I have an amazing mom and dad who help me and my children every day. I have an awesomely devoted boyfriend, who is one of my greatest advocates. I also have two loving sisters, a brother-in-law, three nieces and a nephew who help and care for me any way they can. I also have a very large extended family with my church, community, and work friends. I am very blessed to have so many supporters and people fighting with me!

I began having symptoms in July 2021, and my diagnosis journey was long and very frustrating. I noticed my symptoms very early on and how they correlated with ALS. Being an occupational therapist, I logged, and tracked my symptoms very thoroughly. I even had facts to support my decline such as my grip strength scores and fine motor coordination testing. Even with all of this knowledge and information I was able to give a local neurologist, it wasn’t until I finally got to a doctor at Vanderbilt in Nashville, TN that I actually got on the right track to getting the correct diagnosis.

As soon as I saw a neurologist at Vanderbilt, they knew the situation was very serious. It is so very important for all individuals to be your own healthcare advocate, and if you can’t do it, bring someone with you who can.

October 28th, 2022 was the day I was officially diagnosed. I honestly felt a huge sense of relief that day. I had already been processing the fact that I had ALS before my actual diagnosis date, so this day I felt validated in my concerns with what my body was doing. I also felt like I had a sense of direction on what to do next.

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I knew as soon as I was diagnosed that I wanted to do something to help others who had ALS and others who were going through the diagnosis process.”
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As you would expect, my difficulties didn’t end once I was diagnosed, they just changed to other issues. I found out the hard way that because of a law in Kentucky I did not have an option to purchase affordable Medigap insurance. Medigap insurance is to help cover the 20% that Medicare does not cover. Because of the law in Kentucky, I had only one option when it came to helping cover cost Medicare didn’t cover and that was a Medicare advantage plan.

Being in health care myself, I already knew the disadvantages of these so-called advantage plans. However, I knew I couldn’t cover the 20% out of my pocket so I had to go with this option. Just a few months after having this insurance, they denied my very first claim, well actually preauthorization, for my power wheelchair. Even knowing the history of these Medicare advantage plans, I was still shocked, because how could they deny someone with such a serious illness such a vital piece of medical equipment?

I connected with my ALS Association local care team member, and I explained what was happening with me and my power wheelchair situation. She immediately asked me if she could give one of her colleagues my name and number to talk to about this. She said I may be able to help him get a law changed to fix this for people in Kentucky. I was more than happy to jump on board. This was what I had been hoping for: A way to help!

So, my family and I traveled to Frankfort, KY and I testified in front of Kentucky’s Health Senate Committee about my difficulties, and why this law in Kentucky needed to be changed. I simply told my story and the difficulties I had to face already dealing with getting necessary equipment and basic needs met on top of having a fatal illness. I was honestly very surprised at how impactful my testimony was. It’s amazing how having a fatal illness brings so much more volume to your voice.

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And that’s what we need more and more people with ALS to do; to use their voice to help other people so they do not have to fight the same battles we have had to fight.”

It was a unanimous “yes” vote on passing this bill and then it went on through the Senate and to the governor for signature. The law in KY will take effect in January 2024. I will be able to purchase affordable Medigap insurance then! I felt such an overwhelming sense of accomplishment and happiness, knowing that this will help people in the future, not just with ALS, but with other serious illnesses too.

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There are so many reasons why the ALS community needs advocates to help. I think because of the harsh reality of the diagnosis, so many people are so overwhelmed with all of it, that they feel helpless. When, in actuality, this is when we have the most opportunity to help ourselves and others who may have to face this horrible disease in the future.

ALS needs more attention and needs more funding for vital research for cause and treatment. More people need to know what ALS is and how devastating of a disease it is to be able to understand why this needs more resources thrown at it.

Legislators and insurance companies need to hear from our ALS community that we will not sit back and agree with their decision not to give us the medically necessary equipment to live our lives to the fullest. Have you ever heard the term “the squeaky wheel gets the grease?” The ALS community needs to be a squeaky wheel, and in order to do that, we need more advocates. People living with ALS and people whose lives are affected by ALS.

I was recently asked what I would tell someone who is thinking about becoming an advocate with the ALS Association. I would tell them to just do it.”

Even physicians and health care workers that are very familiar with ALS do not understand what it means to live day in and day out with this disease. That makes people living with ALS and people caring for people with ALS the experts. Having a fatal illness such as ALS gives us such a platform to use our voice, and I feel the more people that use their voices, the more attention we will bring to ALS, and the closer we will be to finding treatments and one day at a cure.

Special thanks to Katie for allowing us to share her personal journey with the ALS community. To learn more about how you can help and get involved in the fight against ALS, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to our blog or follow us HERE.

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