{"id":64925,"date":"2022-07-27T13:55:27","date_gmt":"2022-07-27T19:55:27","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=64925"},"modified":"2024-12-23T14:26:07","modified_gmt":"2024-12-23T21:26:07","slug":"former-nurse-living-with-als-turns-to-advocacy","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/former-nurse-living-with-als-turns-to-advocacy\/","title":{"rendered":"Former UCHealth nurse continues to live life to the fullest amidst ALS diagnosis"},"content":{"rendered":"
<\/div>
\"ALS
ALS warrior Christine Gilmore and her husband, Chris, at Coors Field on Major League Baseball’s Lou Gehrig’s Day in June 2022.<\/figcaption><\/figure>\n

More than 16 years ago, Christine Gilmore followed her dreams and moved to Colorado.<\/p>\n

Gilmore, a registered nurse and nature lover, made the move from Nebraska, inspired by a hospice patient and salient advice he shared with her.<\/p>\n

Gilmore had told him, \u201cSomeday, I\u2019d like to move to Colorado.\u201d<\/p>\n

The patient\u2019s response? \u201cDon\u2019t wait for \u2018someday.\u2019 It might not happen. Or it will be too late to do the things, like outdoor activities, that you want to do.\u201d<\/p>\n

That conversation changed Gilmore\u2019s outlook on life. She could not have imagined then that the patient\u2019s sage advice would help her navigate ALS, commonly known as Lou Gehrig\u2019s disease, with an adventurer\u2019s spirit.<\/p>\n

Since her diagnosis, she\u2019s reached the summit of a 14er, jumped out of an airplane and been honored by the Colorado Rockies at Coors Field on Lou Gehrig\u2019s Day at the ballpark.<\/p>\n

And she has a new purpose in life, one that is entirely unselfish and enormously inspiring.<\/p>\n

Adventure awaits<\/strong><\/h2>\n

Soon after her move to Colorado, Gilmore continued her nursing career and didn\u2019t waste any time seeking adventure, enjoying the outdoors of her new home-state. She hiked a 14er. She snowshoed.<\/p>\n

\u201cBeing outside is almost like my personal antidepressant,\u201d she said. \u201cIt just brings me a lot of happiness. It\u2019s peaceful and calming.\u201d<\/p>\n

Just over six years ago, she had the good fortune of meeting Chris, and they hiked two 14ers together and bonded over a shared love for the outdoors. Then, out of the blue, trouble came.<\/p>\n

She began having difficulty controlling her muscles by tripping and falling, and in 2019 received a diagnosis of ALS.<\/p>\n

\"Christine
Christine Gilmore hikes the Pacific Crest Trail. Although life with ALS is more challenging, Gilmore hasn’t let it stop her from seeking new adventures. Photo courtesy of Christine Gilmore.<\/figcaption><\/figure>\n

Amyotrophic Lateral Sclerosis<\/a> is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It\u2019s a nervous system disease the weakens muscles and impacts physical function.<\/p>\n

ALS is difficult to diagnose early because it can mimic other neurological diseases. There is no single test that provides a definitive diagnosis of ALS. It is primarily diagnosed based on a physician physical examination, review of the individual\u2019s full medical history and a series of tests to rule out other diseases.<\/p>\n

\u201cIt\u2019s a really hard disease to diagnose because there\u2019s no test for it,\u201d said Gilmore. \u201cIt often takes a long time to get diagnosed.\u201d<\/p>\n

Two years after her diagnosis, she wed Chris.<\/p>\n

Summiting Mount Elbert<\/h2>\n

ALS attacks nerve cells and leads to progressive weakness and disability. People who have ALS eventually lose their strength. For Gilmore, it was all the more reason to live an extraordinary life, to seek adventure and live every day.<\/p>\n

\"Christine
Christine Gilmore summits Mount Elbert in September 2021. Photo courtesy of Christine Gilmore.<\/figcaption><\/figure>\n

In September 2021, she summited Mount Elbert, Colorado\u2019s highest mountain at 14,433 feet. The three-day journey to the top was made possible with the help of The Lockwood Foundation<\/a>, which works to make adventure more accessible for those with limited mobility.<\/p>\n

With help from 35 volunteers, and a Trailrider adaptive wheelchair, Gilmore was near the top of the mountain when she told one of the volunteers: \u201cI want to walk the last few steps.\u201d With help from volunteers and her husband, Gilmore walked the final steps to the top.<\/p>\n

\u201cWhen you get to the top of the mountain, it\u2019s just such an amazing feeling,\u201d Gilmore said. \u201cWhile I would like to be able to do the 14ers using my legs, this was the next-best experience.\u201d<\/p>\n

Filled with gratitude, she gathered the volunteers around her and, on top of the world, she talked about living with ALS. She shared the message of \u201cnot waiting for someday.\u201d<\/p>\n

Soaring the sky<\/h2>\n

Another adventure awaited in October 2021 when Challenge2ConquerALS contacted Gilmore and offered a thrilling opportunity.<\/p>\n

Would she like to go skydiving?<\/p>\n

\u201cWell yeah, of course!\u201d she said, simply and spontaneously.<\/p>\n

Gilmore jumped with a nationally licensed tandem instructor at Longmont\u2019s Mile-Hi Skydiving Center, freefalling at 130 miles per hour before pulling the parachute. She took in the splendor of Longs Peak and other mountains.<\/p>\n

\u201cIt was exhilarating. It was an amazing free fall. Once he pulled the chute, we could just glide and look at the landscape. It was really beautiful.\u201d<\/p>\n

(For a video of Gilmore skydiving at the Mile-Hi Skydiving Center in Longmont, click here<\/a>.)<\/p>\n

\"Christine
Christine Gilmore skydives in October 2021. Photo courtesy of Christine Gilmore.<\/figcaption><\/figure>\n

Cruising Alaska<\/h2>\n

She set sail on an Alaskan cruise in May \u2013 a new state, a new experience.<\/p>\n

\u201cFor someone who is disabled, it\u2019s probably one of the better ways to travel,\u201d Gilmore said. \u201cBecause you don\u2019t ever have to get in a car and mostly everything like restaurants and the shows are accessible.\u201d<\/p>\n

She spent a lot of time on the decks of the ship, taking in the beauty of Alaska, watching whales and crossing off another bucket list item \u2013 seeing glaciers.<\/p>\n

\u201cAt one point, we got to the glaciers and there was nowhere else to go; the boat just stopped. And we were just able to sit and watch the glaciers.\u201d<\/p>\n

While on the Alaskan cruise observation deck, she received another invite \u2013 to go to Coors Field to be honored on Lou Gehrig Day. Her next adventure was scheduled.<\/p>\n

Honoring ALS warriors<\/h2>\n

Held in honor of the Yankees first baseman who died of ALS in 1941, the goal of Major League Baseball\u2019s Lou Gehrig Day is to raise awareness about ALS.<\/p>\n

\u201cWhen I came home from the (Alaska cruise) trip, I felt I\u2019d lost hope and started feeling like I\u2019m starting to go downhill again.\u201d The stress of travel and her reliance on others weighed heavily on her. She felt exhausted.<\/p>\n

\u201cAnd the game really pumped me up,\u201d Gilmore said. \u201cIt was just fantastic.\u201d<\/p>\n

\u201cBeing down on the field, meeting (Rockies outfielder) Sam Hilliard and his mom, and being on the jumbotron \u2013 that was so cool.\u201d<\/p>\n

Hilliard has a personal connection with ALS. He lost his father, Jim, to ALS in September 2021.<\/p>\n

Coors Field was filled with ALS advocates, comprised of individuals, family and friends affected by ALS and organizations who are leading efforts to raise awareness and fundraising for ALS.<\/p>\n

\u201cJust being with all of the other ALS warriors, as we call them \u2026 when you have some sense of community, even though I don\u2019t want to be part of the ALS club, there\u2019s something about being a part of a community of people who understand what you are going through,\u201d Gilmore said.<\/p>\n

\u201cAnd after the game, I just felt like I had my fight back. And a purpose. And I just felt like I\u2019m ready to tackle this again. ALS is not going to get me down.\u201d<\/p>\n

The rate at which ALS progresses can be quite variable. The average life expectancy after diagnosis is two to five years, but some patients may live for years or even decades.<\/p>\n

\u201c(Living with ALS) It is hard. It\u2019s a terminal illness. There\u2019s no cure. And I have to live with that every day.\u201d<\/p>\n

\u201cALS takes away a lot of your independence and I have to rely on other people for a lot of things. ALS people don\u2019t like to feel like a burden. ALS is a beast and it fights with me on a daily basis,\u201d Gilmore said. \u201cBut I\u2019m a warrior. I\u2019m not going to allow ALS to get me down or stop doing what I\u2019m doing.\u201d<\/p>\n

\"Christine
Christine Gilmore with her husband, Chris, and Colorado Rockie’s player, Sam Hilliard at Coors Field on Major League Baseball’s Lou Gehrig’s Day in June 2022. Photo courtesy of the Colorado Rockies.<\/figcaption><\/figure>\n

Advocacy for ALS<\/strong><\/h2>\n

Gilmore, a nurse for 26 years (the last six with UCHealth) stopped working and went on disability in 2020. By no means was she done helping people and caring for them. And her long career as a nurse helped her with her own diagnosis.<\/p>\n

\u201cBeing a nurse, I was the one who cared for everybody else and helped heal other people. And now it\u2019s a little different because I\u2019m on the other end of things as the patient. And it\u2019s hard, but I can use that same compassion in my daily fight with ALS.\u201d<\/p>\n

\u201cI found a lot of things that I learned in nursing helped me help other people with ALS.\u201d<\/p>\n

While working in radiation oncology on the UCHealth Anschutz Medical Campus in Aurora, Gilmore provided patients with a lot of education, along with doing assessments, skin care and pain management.<\/p>\n

\u201cA lot of those patients end up not being able to talk and not being able to swallow. Eventually, I will have that same issue but it will be a permanent thing,\u201d said Gilmore. \u201cIt\u2019s [nursing career] helped me as far as the education I provided these patients, as far as nutrition and pain management. I\u2019ve been able to turn back around and use on myself.\u201d<\/p>\n

Throughout Gilmore\u2019s nursing career, she advocated for patients, trying to make changes that made every patient\u2019s experience better. When she had to leave her job, she felt that she lost her life\u2019s purpose. She wanted to feel useful and needed. She wanted to make a change and have an impact.<\/p>\n

She found her new calling, advocating for ALS.<\/p>\n

\u201cI want to do something that will help the next generation – the people who are being newly diagnosed. The people who are going to be diagnosed in the future. Anything we can do now and make a change will make their lives hopefully better and hopefully we\u2019ll be able to start extending people\u2019s lives and make ALS not a fatal disease but a chronic disease.\u201d<\/p>\n

Gilmore knows of the big need to create awareness. She continuously advocates for legislation that will help ALS patients like her, now and in the future.<\/p>\n

\u201cThe more people who understand the disease and understand that it could be treated better, the more likely that changes are going to happen. We need more advocates, more people to advocate for new drugs, and advocate for the FDA to approve the drugs that are coming out of trials right now. The more people that know about it the more action that\u2019s going to happen.\u201d<\/p>\n

She spends part of her day advising others on social media. New members of support groups often ask questions, and she provides advice within her scope, within her experiences with ALS and within her experiences as a nurse.<\/p>\n

She feels fortunate to have received assistance and support along her journey, including getting a wheelchair van, accessible bathroom renovation and adjustable bed.<\/p>\n

\u201cI\u2019m really good at researching this stuff [available foundations and accessibility grants] and passing all these grants along to other people.\u201d<\/p>\n

Gilmore dedicates a great amount of time and energy to various support groups and organizations. She frequently makes phone calls to lawmakers, and her efforts have paid off.<\/p>\n

\u201cWe were able to get the Act for ALS passed in both the House and the Senate,\u201d Gilmore said.<\/p>\n

Act for ALS, or Accelerating Access to Critical Therapies for ALS Act, is a bill that establishes grant programs for diseases like ALS. It expands access to ALS treatments for individuals who are not otherwise eligible for clinical trials. She watched online in December, 2021 as President Biden signed the Act for ALS bill into legislation.<\/p>\n

\u201cIt was a very happy day for a lot of us because we worked so hard to get there advocating for ourselves,\u201d Gilmore said.<\/p>\n

This summer, the Food and Drug Administration (FDA) extended the review period of a new treatment drug for ALS by three months. In response to this delay, ALS advocates launched a big campaign to call attention to delays that could cost ALS patients who don\u2019t have time on their side. The sense of urgency motivates Gilmore.<\/p>\n

\u201cI spend a lot of time tweeting, trying to get the FDA to understand that we don\u2019t have time to wait,\u201d Gilmore said. \u201cSome people have things they want to do. They want to see their grandson being born or walk their daughter down the aisle and all it would take would be one point to take that experience away.\u201d<\/p>\n

Living with ALS<\/b><\/h2>\n

Gilmore currently spends 10 days a month at UCHealth to receive infusions in hopes of slowing the progression of ALS.<\/p>\n

\u201cEvery single nurse up there on the infusion center is fantastic and they\u2019ve become like a little family to me.\u201d<\/p>\n

While the nurses are great, infusions leave Gilmore feeling tired and exhausted.<\/p>\n

\u201cRight now, I feel like I\u2019m tethered to an IV pole and during those two weeks we can\u2019t go anywhere. My days are completely tied up. We have to arrange all of our travel around my infusions.\u201d<\/p>\n

Gilmore will begin taking the oral version of the IV medication in August.<\/p>\n

\u201cOnce we get the oral form, it\u2019s just one dose in the morning then that\u2019s it. I\u2019m free for the whole day.”<\/p>\n

\u201cSo I will miss being around them [the UCHealth nurses] because they are just a great group of people but on the other hand, I just want to take advantage of the time I have left, and going to the infusion center 10 days a month really takes away from that.\u201d<\/p>\n

She has big plans for the rest of 2022 and, of course, it includes being outside \u2013 the best medicine of all for her.<\/p>\n

She lives on the High Line Canal Trail in Denver and wants to enjoy more of those nice, long drives on her power wheelchair through nature, taking in the scenery of trees and water features along the route.<\/p>\n

In addition to her interest in skydiving and hiking again, Gilmore would like to try new activities, like scuba diving and adaptive surfing.<\/p>\n

\"Christine
Christine Gilmore skydiving in October 2021. Photo courtesy of Christine Gilmore.<\/figcaption><\/figure>\n

\u201cI am always looking for other activities that I can say \u2018ALS has not stopped me from doing that,\u2019\u201d Gilmore said. \u201cSo I\u2019m constantly researching and trying to find some other adventures out there.\u201d<\/p>\n

She has taken a couple writing classes and is thinking about starting a blog and writing a memoir.<\/p>\n

\u201cI\u2019m motivated to continue to show other people that you can still have a life despite ALS. I just want everybody to go live as good a life as possible, while we\u2019re still here.\u201d<\/p>\n

She\u2019s still reminded of the words of the hospice patient she met 16 years ago.<\/p>\n

\u201cThe one thing I want to share with others is don\u2019t wait for \u2018someday.\u2019 Because you just don\u2019t know what your future holds. And if you say: \u2018I\u2019m going to wait until after I retire to travel, to do all these things,\u2019 it might be too late.\u201d<\/p>\n

\u201cAnd so you need to enjoy every bit of life while you have it.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

More than 16 years ago, Christine Gilmore followed her dreams and moved to Colorado. Gilmore, a registered nurse and nature lover, made the move from Nebraska, inspired by a hospice patient and salient advice he shared with her. Gilmore had told him, \u201cSomeday, I\u2019d like to move to Colorado.\u201d The patient\u2019s response? \u201cDon\u2019t wait for […]<\/p>\n","protected":false},"author":2355,"featured_media":64930,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[7],"tags":[167,1593,184,1497],"class_list":["post-64925","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories","tag-clinical-trials","tag-colorado-rockies","tag-neurology","tag-uchealth-university-of-colorado-hospital"],"acf":[],"yoast_head":"\nFormer nurse living with ALS turns to advocacy - UCHealth Today<\/title>\n<meta name=\"description\" content=\"Former UCHealth nurse lives life to the fullest amidst ALS diagnosis. 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