Team Dak
Help us raise money to find a cure for ALS!
Our story
Event: | Cleveland Walk |
Date: | Sunday, September 15, 2024 |
Team: | Team Dak |
Our Story:
Dakota and I met online in 2017 and began dating shortly after two weeks of getting to know each other, and it was magical. Dak had the mostly amazing personality, he was kind and caring and he was the calm to my storm or the yin to my yang as some would say. We were soulmates without a doubt, I knew within the first month that he was the one I was going to marry.
Dak and I moved along pretty quickly and I moved in with him and his dog Lulu after only 5 months. We learned a lot about each other and living together and working as a team. Our first vacation together was Florida in 2018 for a wedding and on the last night he popped the question on the beach! Of course I said yes!! He had it all planned out ( he even got a secret photographer!) We then began the process of wedding planning and wanted to get married in the fall, we wanted to wait until 2020 because I was going back to school for my BSN, we had secured the perfect date 10.10.2020! Then as we all know Covid hit…..
Going into 2020 with Covid we were holding our breath for our wedding and hoping we could still have the day of our dreams (Dak was very involved in planning). Dak first began to notice problems in his left hand, he was having a hard time closing his hand and grasping tools (he was an electrician).
Dak was still having problems with his hand but he felt like his arm was getting weaker and more difficult to move so we went back to the doctors. He got an MRI to make sure there was no cervical or spine issues and there wasn’t a problem in site so we got sent to UH Neurology. Here they began more testing (blood work, ultrasounds) to see what could the problem be. The doctors first thought he had what was called Parsonage-Turner syndrome in which the nerves of the arm would die (no cause) but they eventually grow back overtime. While we got this first diagnosis we thought we were seeing progress with his arm however he then began to say his legs felt sore and weak and he fell in July of 2020. We went back to the doctors and they then thought he had what was called MMN or multi-focal motor neuropathy. We were hopeful with this diagnosis because they could give him IVIG (immunoglobulin) and this would take care of the issue. Dak began receiving treatments of IVIG that August with no positive results, he was getting weaker and lost weight. We went back to the doctors more because something still wasn’t right, we got sent to gentics at the end of December 2020….
Here we received the worst news… Dak has ALS; and an aggressive form. I knew this was not good, as a nurse you hear about it in nursing school and how awful the disease is, how aggressive, the prognosis (3-5 years) and that there isn’t a cure… it was so hard to process for him, myself and our families. I knew we had a very hard road ahead of us but we were gonna give it our all…
January 2021
Dak began a clinical trial for an experimental drug that had the potential of slowing down the disease but not cure it. This trial was very extensive and difficult, it involved traveling to Columbus every three months (it was originally every month), pre-labs, injection day (spinal tap was the only way he could receive the drug) and traveling back home. Not to even mention all the doctors appointments, speech, physician therapy, occupational therapy and personal training that he was doing. Dak was a true fighter through and through.
The trial was split into two phases in which the first phase was about a year and he would either receive the drug or the placebo (we would not know until the trial was over which was about 2.5 years) and the second phase is when he would for sure receive the drug.
Dak and I went every three months to Columbus in hopes that he was receiving the drug and hoping his symptoms would slow down… this was not the case. Dak continued to progress with weight loss, difficulty to ambulate, difficulty doing simple tasks such as changing his shirt, taking a long walk and writing. By October 2021 he was walking with a cane and taking very short walks. We were lucky to make many modifications to our home including ramps and a roll in shower and to get any type of medical equipment he would need (electric wheelchair).
We continued on making modifications to our home so we could be as accessible as possible and I helped him with anything he could need. As we went into 2022 he continued to progress with weakness, difficulty eating certain foods, decreased ability to walk and weight loss. His ability to do things on his own became more and more difficult. I helped him with bathing, eating (both hands were very weak and he couldn’t lift them), waking up and getting dressed, going to bed, taking care of the house and dogs all while continuing to work. We had many great friends and family that stepped up to help with meals, cleaning and yard duties. At this time he voice muscles were being affected and his speech became a big challenge. He went from talking fine to slowing decreasing his sentences to just words for what he specifically wanted or needed. He had an electronic computer that synced with his eyes that would enable him to communicate with us for when he was too tired to speak (he hated it 😂). We established our own way of communicating and I had written out anything I could think of that I could point to and ask him what he needed/wanted. He also had the whole alphabet written out and we would point to rows and then to letters in the row he wanted to help make sentences or words that he was thinking.
The holidays came and went and that brings us to 2023….
At this point Dak was total care; I got him up every morning and did our morning routine of getting dressed, brushing teeth, doing his hair (he actually liked my haircut and beard trims), and breakfast. When I was working Dak would watch t.v and his parents would come help with lunch and hangout with him for a few hours until I got home to be with Dak. Dak’s voice was barley audible at this point but he was still completely alert and with it. We were still doing the trial up until February of 2023..
February 2023
This was our make it or break it to move to phase 2 of the trial..Dak would receive the drug for sure at this point.
At this point Dak’s progression was just too much. After much discussion we decided to quit the clinical trial and just take the time that we had together. I worked until the end of February and took a leave of absence to spend time and be with Dak.
Dak passed away at home peacefully on April 12, 2023 with family at his side. He fought so hard against a disease that was too much.
Please consider donating so no one has to go through what my husband did. Together we can help find a cure.
P.S.: We were happily married 10.10.20 with a BBQ reception the following fall of 2021, we also got our second Aussie Remmy in 2017. We were married for almost 2.5 years but together for 6.
WHY WE NEED YOUR HELP
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
That’s why we’re participating in the Walk to Defeat ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us?
ABOUT ALS
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!