Christine Gilmore RN @KickenALSAss Twitter profile

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Christine Gilmore RN

@KickenALSAss

1 year

A great day so far. Caregiver was here for shower. She totally cleaned our bedroom & kitchen. She cut my long toenails. Then I found an esthetician who does facials at home. That was heavenly! Next, my husband is going to take me shopping. Yay! Not Today #ALS

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Christine Gilmore RN

@KickenALSAss

1 year

#ALS was discovered in 1869. It became widely known 1939 when Lou Gehrig had to end his baseball career. Yet, science has still not found an effective treatment, and there is no cure. Seth fought hard to advocate for himself and others with this cruel disease.

Seth Poling

@SethPoling10

1 year

There is a beginning and end to every story; this is the end of my story, but this is not goodbye; it is a see you later. In the end, it's not the years in your life that count. It's the life in your years. Friends and family, THANK YOU. Please continue my fight to #EndALS .

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Christine Gilmore RN

@KickenALSAss

2 years

@ejdickson When I was in junior high, I did participate in bullying someone. I was 13. I am not that person now. I was young, stupid and immature. I think about it often and feel horrible for my behavior.

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Christine Gilmore RN

@KickenALSAss

9 months

This is us, 7 years ago. Healthy with occasional symptoms of #ALS . I was Diagnosed 28 months later.

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Christine Gilmore RN

@KickenALSAss

1 year

After a 4-year battle with #ALS , Jennifer Schroedl died today. In 1869, ALS was identified as a disease. Since then, only 3 FDA approved medications that will maybe slow the progression. No cure. One treatment we are waiting for, #NurOwn , has shown to slow progression and even

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Christine Gilmore RN

@KickenALSAss

7 months

Thank you @bsw5020 and @sabrevaya for continuing to fight for yourselves, and fighting harder for the rest of us with #ALS . I love the care I get from @DGeeEss1 . Thank you for @synapticure

CBS Sunday Morning 🌞

@CBSSunday

7 months

Brian Wallach has beaten the odds after being diagnosed with ALS. Given six months to live, remarkably he has survived six years. Lee Cowan revisits Wallach after two years to find out how he and his grassroots organization I Am ALS helped pass a law (Act for ALS).

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Christine Gilmore RN

@KickenALSAss

2 years

@7Veritas4 I was telling someone yesterday that it really is sad that people can't see who this person was before they were in the later years of life. In nursing homes, I wish there were photos of the person in their younger days, and a scrapbook that shows who they were.

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Christine Gilmore RN

@KickenALSAss

2 years

I cried in the shower yesterday. Hard, ugly face crying. I cried for @sandymorris333 . I cried for myself and my husband as I lose points and experience anticipatory grief looking at our future. I cried for @bsw5020 and @sabrevaya . I love them both and don’t want to lose Brian.

Sandy Morris

@sandymorris333

2 years

And then there were 4. We are the Truest Most Beautiful Love Story. You won't 'move on' but you will move forward-w/all the love I was able to pour into your hearts w/the time allowed. It was my privilege & honor being your mom. Until we meet again my beloveds 💫 #MomIs #SandyIs

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Christine Gilmore RN

@KickenALSAss

24 days

My husband‘s out of town. These wonderful friends took care of me. They cleaned/organized the kitchen. They became proficient at using the hoyer. They fed me when my arms were too weak to feed myself. I have great friends. #friendship . Take that #ALS

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Christine Gilmore RN

@KickenALSAss

5 months

One of my #ALS buddies died yesterday, using MAiD. It’s sad we have to resort that. Someone from ALS United called this morning to let me know. He told her to tell me how much he appreciated me. I feel like someone just ripped my heart out. This is bull💩 that we still 🧵

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Christine Gilmore RN

@KickenALSAss

8 months

Don’t wait for someday, it might not happen. Please, I’m begging you. I never thought I could get a terminal illness, but here I am, with #ALS taking over my body. I wanted to climb every 14er in Colorado. Now it’s too late. Every time you you say someday, write it down and

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Christine Gilmore RN

@KickenALSAss

2 years

@MeidasTouch If this is indicative of his speaking abilities, why would anyone listen to this?

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Christine Gilmore RN

@KickenALSAss

2 years

Wilderness on Wheels at the base of Kenosha Pass in Colorado.

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Christine Gilmore RN

@KickenALSAss

5 months

I miss the old me before ALS took over my body.

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Christine Gilmore RN

@KickenALSAss

2 years

My journey hasn’t ended, it simply changed directions. #ALS I will keep going. @FDA there are many #ALSwarriors here. We are one of the strongest groups I know. Life before ALS ended, & we stepped up & have done more than expected. That’s who we are. #wearethestorm

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Christine Gilmore RN

@KickenALSAss

2 years

@SaltyLikeSaline Hospitals have created this problem by cutting staff, floating nurses into areas they are unfamiliar with. Adding more responsibilities when they are already stressed. Nurses shouldn't feel rushed to take care of their patients.

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Christine Gilmore RN

@KickenALSAss

1 year

Yesterday I went for a small surgical procedure. I needed a suprapubic catheter. For someone w/ #ALS , & decreased lung capacity, surgeries can be scary. I was told to bring my NIV w/me. I wear it every night to ensure that I breathe properly. In pre-op, I told several people 🧵

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Christine Gilmore RN

@KickenALSAss

7 months

This is #ALS . My husband is walking around the house wearing a t-shirt and shorts. I have two blankets covering me, warm socks and the stocking cap.

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Christine Gilmore RN

@KickenALSAss

1 year

This is what I did today thanks to

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Christine Gilmore RN

@KickenALSAss

6 months

With every loss comes grief and sorrow. I used to have a break between losses, but over the last few weeks, my arms have weakened almost every day. I can’t type on my laptop. I can only hunt and peck on my phone, but the phone is getting too heavy to hold. I have been able to

Brian Wallach

@bsw5020

6 months

I am losing my ability to walk, yet my mind roams farther than ever. I have lost my ability to type, yet my words reach farther than ever. All of our lives change as we grow older, yet our capacity to love grows ever greater. Good night moon.

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Christine Gilmore RN

@KickenALSAss

1 year

This is great news Brian. After I had my suprapubic placed, I qualified for home health under Medicare. One PT works on flexibility and range. The other PT has been helping me to maintain or improve my strength. I won’t see big improvements, but maybe enough to do my hair again😊

Brian Wallach

@bsw5020

1 year

Today, I want to talk about physical therapy as it has helped me go from walking 4 feet to 16 feet in eight weeks. Let’s get physical…therapy If you have any questions about how to get it in your home or how much it costs, I know someone who can help: @synapticure

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Christine Gilmore RN

@KickenALSAss

2 years

@Hugh_Cooper @DGlaucomflecken Insurance tried to deny one of my ALS meds & said “maybe the doctor can prescribe a generic or a different drug”. Seriously, there are only 2 drugs approved. I’ve paid insurance premiums for at least 30 years. But go ahead and deny something that will slow the progression of ALS.

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Christine Gilmore RN

@KickenALSAss

6 months

@SandyGirl4Him My guess is that Native Americans were living the American dream until white men moved in.

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Christine Gilmore RN

@KickenALSAss

1 year

Conversation with my dad: he asked how I and my husband are doing. I told him my husband is physically and emotionally tired from taking care of me. He said “well you knew that was going to happen.” 🤨 #NoEmpathy #fuckALS

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Christine Gilmore RN

@KickenALSAss

3 years

My 10 year old niece drew this. She & her parents & my husband climbed this with me. I am the one being carried. Mt. Elbert is 14439'. We defied ALS. Thank you to Jeff Lockwood, the Lockwood Foundation & about 35 volunteers who made it happen .

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Christine Gilmore RN

@KickenALSAss

2 years

#ALS sucks. Vacation injury 3. @DrCaliff_FDA something needs to be done. My husband was transferring me to my wheelchair from the shower chair. I put my legs too close together and couldn’t stand. Ended up on the shower floor crying. Why can’t I try #NurOwn ? Why don’t you care?

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Christine Gilmore RN

@KickenALSAss

2 years

@SaltyLikeSaline I am glad I am no longer a nurse. I had a near miss when administering chemo. The patient wasn't injured. During a debrief, a doctor yelled at me for not being more remorseful. As if I were the only one involved. The pharmacy mixed the wrong med. I messed up too.

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Christine Gilmore RN

@KickenALSAss

9 months

Here is the good post. Are you sitting down? Well, I’m guessing that most of you with #ALS were already seated. We just returned from a weeklong trip to Cape Cod. Two flights on @united and my power chair has no damages. The flight attendants were great, and gave me special

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Christine Gilmore RN

@KickenALSAss

2 years

Posting an ALS update. The last few weeks I’ve experienced many changes. I am no longer able to transfer by myself to my chair/bed/ toilet. It takes a lot of effort for the person helping me. Sometimes I can shuffle my feet to pivot. I have a feeling it won’t be long before

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Christine Gilmore RN

@KickenALSAss

1 year

The barrier to staying alive with #ALS is finding 24/7 care. We stay alive in the hope that better treatments will be approved. Some have young children & want to see them grow up. There are many reasons. Graduations, wanting to see children get married or the birth of grandkids

Seth Poling

@SethPoling10

1 year

Getting a trach comes w/ challenges, i.e. finding more than 2 caregivers. It's disheartening to plead for help & feel like there aren't many options. It's a harsh reality accepting people may not be willing to provide care, making it difficult to continue my ALS journey. #EndALS

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Christine Gilmore RN

@KickenALSAss

1 month

A big thank you to the volunteers who helped place these flags. Each of these flags has the name of someone who is living with or has succumbed to #ALS . #ALSinDC

I AM ALS

@iamalsorg

1 month

We are here on the mall and the flag display is in the ground!! Thank you so much to all the volunteers who braved both sun and a little rain to help us out! #ALSinDC

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Christine Gilmore RN

@KickenALSAss

1 year

Another #ALS warrior taken from us. Larry Ujhely died last night. He was diagnosed 7 years ago on Feb 4.I don’t know if he has a Twitter handle. #endALS #findacure @aVoice4ALS @US_FDA @DrCaliff_FDA #NurOwnworks . @JasonCrowCO

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Christine Gilmore RN

@KickenALSAss

2 years

@markwwilsonmd I have ALS. My LTD insurance had to review my claim. What makes them think I will have improved? No cure. Progressive Neurodegenerative terminal disease. Dr filled out forms, I was still quizzed by insurance. I mean come on!

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Christine Gilmore RN

@KickenALSAss

15 days

So here’s some unusual news in the world of #ALS . I was informed by my home health nurse they have extended my physical therapy visits because… I’m showing improvement in strength . People with chronic illnesses or those who are terminal should not be discharged due to lack

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Christine Gilmore RN

@KickenALSAss

1 year

it was ordered but I haven’t received it. Second, my pain is right now. #ALS is a cruel and terminal disease. Those of us with this disease know our bodies more than anyone. Don’t make us suffer any more than we already are. 4/4

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Christine Gilmore RN

@KickenALSAss

8 months

4 years ago was about the time I started falling at work. I continued to work 7 more months. I put my job over my health and safety. (My husband just asked if I was required to wear that😂) #endALS

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Christine Gilmore RN

@KickenALSAss

2 years

@SethPoling10 This week one of my friends chose Death with Dignity, AKA Medical Aid in Dying. We were close to the same age and diagnosed within months of each other in 2019. I respect this decision and no matter what decision you make, it's the right one. Hugs

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Christine Gilmore RN

@KickenALSAss

8 months

I think the NFL should have an #ALS awareness day. NFL players are four times more likely to develop ALS. Here’s a list of 29 NFL players who are living with it or lost their lives because of it. @NFLonFOX @ESPNNFL @nflcommish

List of NFL Players with ALS | American Football Database | Fandom

This is a list of current or former NFL Players who have or had amyotrophic lateral sclerosis (ALS). (One coincidence: Waters, Hazeltine, and Lewis were all on the 49ers roster in either 1963 or...

americanfootballdatabase.fandom.com

Atlanta Falcons

@AtlantaFalcons

8 months

We're partnering with the @Saints to host 50/50 raffles during both of our matchups this season! The proceeds will directly benefit @TeamGleason and @timgreenbooks ’ #TackleALS , in partnership with the Healey & AMG Center at Mass General

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Christine Gilmore RN

@KickenALSAss

10 months

2 yrs ago, this crew took me to the summit the tallest mountain in the Rocky Mountains. This org. takes only one person/yr. They moved me to the top of the list due to #ALS Between August and mid October that year, I got married, traveled via @outthereco

Woman with ALS summits Colorado's tallest mountain at 14,433 feet | OutThere Colorado

After moving to Colorado in 2006, Christine Gilmore quickly took to hiking and snowshoeing. Her passion for the outdoors continued for more than a decade with her starting to climb

denvergazette.com

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Christine Gilmore RN

@KickenALSAss

1 year

My voice works well, however I was thinking about this tonight. Sometimes I have difficulty thinking fast enough to jump in. If I couldn’t speak and relied on eye gaze, I wouldn’t have been able to participate.

Brian Wallach

@bsw5020

1 year

I spent most of the day with friends. I can know longer drive a conversation the way I used to and I need my wife’s help to be heard, but the warm embrace of friends still feels amazing. Good night moon.

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Christine Gilmore RN

@KickenALSAss

2 years

@DocDifferently The clinic rooms where I worked were very small. If someone was in a wheelchair, it was difficult to squeeze a family member in. As a patient, the accessible bathrooms in the hospital really weren’t. Why don’t they ask patients, nurses, OT, PT to give input to the design?

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Christine Gilmore RN

@KickenALSAss

5 months

I’ve been trying to get my home care agency to give me more CNA hours under Medicare. I want 5 mornings/wk for 2 hrs per visit. My nurse was trying to advocate for me. The person she spoke to said maybe I need to go to a nursing home. I am so angry. 🤬 I wish I could speak

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Christine Gilmore RN

@KickenALSAss

7 months

Legs are already gone. Now hands and arms are worsening. It won’t be long before I lose another part of my independence. Do any of you with loss of limbs stay home alone? The other pic is how I wake up every morning.

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Christine Gilmore RN

@KickenALSAss

2 years

It’s been a rough few days. I’ve been in denial from the beginning. First denial that I had the disease, then denial that I would get worse. I continued with denial while going back and forth between anger and bargaining. Anger towards my body, God, doctors who ignored my 🧵

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Christine Gilmore RN

@KickenALSAss

1 year

Yesterday was quite the day. We decided to head out to get a haircut. In the past, I would pay $60+ for a haircut. My husband convinced me to get a $22 cut @greatclips . They were very accommodating. They allowed me to stay in my power wheelchair. The stylist said her sister🧵

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Christine Gilmore RN

@KickenALSAss

1 year

I was on an #ALS support group today. When it was my time to introduce myself, everything in my head came out in one long sentence. I know there is a term for that. Verbal diarrhea? I jumped from one subject to another. I’m so embarrassed. There are so many things in my head.

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Christine Gilmore RN

@KickenALSAss

1 year

My meds since January 1st. This is criminal. In order to lengthen my life, I have to go broke. Luckily, I was able to receive grants to cover my copays. 9 claim(s) for year-to-date Billed $56,894.36 Plan Paid $50,893.89 Patient Responsibility $6,000.47 f***k #ALS

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Christine Gilmore RN

@KickenALSAss

2 months

Day 2 of @TeamGleason Adventure. We went to Yosemite National Park today. (We will be visiting 6 NPs this trip). #ALS you can #kissmyass .

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Christine Gilmore RN

@KickenALSAss

2 years

#ALS won’t stop me from living.

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Christine Gilmore RN

@KickenALSAss

19 days

My flag is one of 6000 flags displayed on the National Mall in DC. These flags represent people who are living with or have died from ALS.

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Christine Gilmore RN

@KickenALSAss

2 years

@BlueStorm2024 It's not suicide. And it's not physician assisted. It's called Medical Aid in Dying, or Death with Dignity.

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Christine Gilmore RN

@KickenALSAss

1 year

improve function. If NurOwn was available, Jennifer might still be here. Jennifer had the most amazing smile. I will never forget her.

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Christine Gilmore RN

@KickenALSAss

2 years

I didn't realize how much effect it would have on me when I could no longer drive. It's been 3 weeks and I can't shake the deep sadness. Sometimes I just want to go for a drive or go shopping, by myself, at the spur of the moment. I feel trapped. #ALS SUCKS.

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Christine Gilmore RN

@KickenALSAss

2 years

We’ve lost many pALS recently. Why can’t we try #NurOwn ? It has helped many, even reversing symptoms. @BrainstormCell and @US_FDA how about giving us a fighting chance? How do you feel about denying pALS the ability to watch their children grow up? YOU can be the change. #EndALS

AZ Latina ☮️🌊🟦

@aVoice4ALS

2 years

Please no more. Tonight the #ALS community lost a #USMC #Veteran , #NavalAcademy grad, #Navy Football player & #Oklahoman ... But most of all another young Dad RIP #TylerTidwell You paid the ultimate sacrifice for your service Pray for Cassi & the kids

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Christine Gilmore RN

@KickenALSAss

7 months

I commented on this stating I had to stop working at 53. Now I feel my comment is insensitive and I’m very sorry. There are many pALS who have barely started their careers only to have ALS rip that away from you. Please forgive me. I’m sad for all of you who experienced

Sarah Parton (she/her)

@sarahkarpar

7 months

My last day of work forever is today. It wouldn't matter what day it is, I would never be ready. #ALS has taken most of my legs and now my job. Like a ninja thief, it sneaks in to dismantle my life. Bittersweet day for sure. #endals

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Christine Gilmore RN

@KickenALSAss

1 year

I’ve been waiting over a week for my Oxy ER.,I called Walgreens this morning to find out what the H is going on. They said it’s on back order. I’ve tried many things to help the pain but nothing lasts through the night. Another reason to say F*ck #ALS .

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Christine Gilmore RN

@KickenALSAss

1 year

Next time, I will write “No O2” on my upper lip.

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Christine Gilmore RN

@KickenALSAss

7 months

#ALS is cruel. I loved hiking, my legs went first. I prided myself on my independence and it’s almost gone. Why, after 154 years, is there not a cure? #endALS .

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Christine Gilmore RN

@KickenALSAss

2 years

@sulmoney You have a right to ask for a like physician . They cannot deny this and are required to find one, even if they have to contract out.

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Christine Gilmore RN

@KickenALSAss

1 year

The best part of waking up is Baileys and coffee in my cup. Not today #ALS . I’m going to have a good day and hopefully end the day with a @nuggets win.

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Christine Gilmore RN

@KickenALSAss

2 months

2015 after 5 months working with a personal trainer and a 30 lb weight loss. Then about a year later #ALS Started attacking my body. #FuckALS

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Christine Gilmore RN

@KickenALSAss

2 years

@michaeldf88 @jherrerx myself. They have to pat me down anyway & swipe my seat, so why do I have to take everything off? A kind TSA agent helped me & sent my coat through the scanner. When we were done we discovered someone stole my coat. We found the thief and the agent snatched it out of her hands.

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Christine Gilmore RN

@KickenALSAss

7 months

@thatnrselife I recently found out a friend was in the hospital on comfort care. She wasn’t responsive when I saw her. She died about 20 hous later. Apparently she and her husband decided not to tell me because I have ALS they didn’t want to burden me. I didn’t get to say goodbye 😭

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Christine Gilmore RN

@KickenALSAss

1 year

Here’s my flag. Thank you @alsadvocacy !

ALS Advocacy

@alsadvocacy

1 year

.⁦ @KickenALSAss ⁩

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Christine Gilmore RN

@KickenALSAss

3 years

Who says people with ALS can't hike? Not me or the volunteers from the Lockwood Foundation. Thanks for a great day!

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Christine Gilmore RN

@KickenALSAss

2 years

@slwein I’m 56, one ovary and extensive endometriosis. I went to the doctor to have my IUD out. The med student asked what I was going to use for back up birth control. 🤪

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Christine Gilmore RN

@KickenALSAss

1 year

Do you ever just forget that you have ALS? I’m sitting here waiting to go to the parade. I just saw a woman carrying a foldable chair. I thought “ shoot I should’ve brought one of those chairs”. Umm, I’m already in a chair, duh.

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Christine Gilmore RN

@KickenALSAss

3 years

I was talking to someone while waiting for my infusion. He didn't know what ALS is. I gave him the short version. @alsassociation why aren't you doing a better job at awareness? I see cancer awareness everywhere. Billboards, commercials, sporting events, etc. Nothing for ALS

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Christine Gilmore RN

@KickenALSAss

2 years

I may or may not have cried a little.

Former UCHealth nurse continues to live life to the fullest amidst ALS diagnosis

Former UCHealth nurse lives life to the fullest amidst ALS diagnosis. Her life's purpose is entirely unselfish and enormously inspiring.

www.uchealth.org

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Christine Gilmore RN

@KickenALSAss

1 year

I guess my typing/texting days are almost over. I’m trying to learn how to do voice to text with my laptop & phone. The hard part is learning all of the commands to do different functions, like you can’t just say backspace or delete. One more loss. It’s never ending. #FuckALS

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Christine Gilmore RN

@KickenALSAss

2 years

Today was day one of the newest #ALS medication, #Relyvrio . @sunnystrongals and @limpbroozkit I didn’t gag at all. Maybe it’s your young tongues. I did a coffee with Irish cream swish/gargle before and after. Maybe that’s the trick?

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Christine Gilmore RN

@KickenALSAss

1 year

The money we are putting out for caregivers is ridiculous. Family members should not have to provide the extra care that those of us with #ALS need. Some family members are working and taking care of children. @GovofCO we need state funded programs. I don’t qualify for Medicaid

Ady Barkan

@AdyBarkan

1 year

I shouldn’t be considered “lucky” to have incredible caretakers or access to at-home care. This should be available to everybody who needs it. Tell me how that’s a controversial opinion again? 🤔

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Christine Gilmore RN

@KickenALSAss

2 years

@ambernoelle My mom's doctor prescribed diet pills for her when she was pregnant with me.

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Christine Gilmore RN

@KickenALSAss

2 years

@DeafOn4Wheels Then there is this. The man yelled at ME. I nicely pointed out that he was parked over the lines making it impossible for me to get in my van. He told me to shut up and leave him alone.

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Christine Gilmore RN

@KickenALSAss

1 year

Update: CIGNA is going to cover the drug!

Christine Gilmore RN

@KickenALSAss

1 year

I’ve been on oral Radicava for a year. @Cigna has been covering a portion of the cost, Healthwell has been covering the rest. My doctor had to send a new prescription to Accredo. Cigna denied the claim, saying it’s not on formulary. It wasn’t on formulary this past year yet

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Christine Gilmore RN

@KickenALSAss

1 year

After surgery, I was in severe pain, despite the fentanyl. Fentanyl has never worked for me. I was offered Tylenol. I then managed to squeak out, “it’s a 9”. I have #ALS , which is terminal. Letting a person remain in pain is unethical.

EH

@ForensicMHSA

1 year

Fear of opioids is causing patients to needlessly suffer severe pain

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Christine Gilmore RN

@KickenALSAss

3 years

@Vanessa_RN_ER I always hated when a boss would say that a certain is a VIP and we should treat them special. I told them I treat all of my patients well. A VIP doesn't deserve preferential treatment.

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Christine Gilmore RN

@KickenALSAss

1 year

Having #ALS makes traveling so difficult. Our family would like to have a trip together to the Phoenix or surrounding area. I’ve spent hours trying to find a home truly accessible. I didn’t think about things like 32” doorways, barrier free entry ways or how I would shower.

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Christine Gilmore RN

@KickenALSAss

2 years

Yesterday may have been my last day-after-Thanksgiving to eat Turkey sandwiches while watching Nebraska v Iowa.Not my last day of football, just the turkey sandwich . I’m finding I’m taking much smaller bites & chewing it until it’s mush in my mouth. I don’t choke, but it gets 1/

Leanne Yacyshyn

@leanne_yacyshyn

2 years

#EndALS is trending! Let's keep it going.. 😀

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Christine Gilmore RN

@KickenALSAss

11 months

Where are all of my #ALS friends? Since twitter changed, I am seeing less posts from #pALS .

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Christine Gilmore RN

@KickenALSAss

1 year

I have ALS, a painful kidney stone, a new subrapubic catheter and trying not to vomit. This is inhumane. 4/4

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Christine Gilmore RN

@KickenALSAss

1 year

@sabrevaya Thank you for sharing. Caregiving needs to be covered by Medicare. We deserve to continue to live a full life, but the cost of caregivers takes that away. I want to travel, but should we spend the money? I don’t know. #ALS is a thief, robbing us of the life we should be living

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Christine Gilmore RN

@KickenALSAss

2 years

allowed me to support you. The list would be long and I don’t want to forget anyone. I feel like we are family. Nobody without ALS really understands what we are going through. I’m here for you and will continue to advocate for our group. Love to all of you.

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Christine Gilmore RN

@KickenALSAss

1 year

Seth left this world today. I can’t come close to filling his shoes, but I’m going to try. With tears I’m my eyes, I say goodbye.

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Christine Gilmore RN

@KickenALSAss

5 months

Thank you, Maria, for recognizing the hard work of Sandra & Brian. They are creating #ALS awareness, one of the first steps to making change happen. Even with all of the exposure, they are down to earth & humble. I’m glad to have them on my side as we make this journey together

Maria Shriver

@mariashriver

5 months

What a difference they are making. Thank you @sabrevaya and @bsw5020 for your courage, your passion, and your drive to move humanity forward. We are all so grateful to you!

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Christine Gilmore RN

@KickenALSAss

1 year

Happy Nurses Week! Circa 1994.

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Christine Gilmore RN

@KickenALSAss

2 years

@bsw5020 Thank you. The sun just came out in Denver after a day of dark skies. The sun is happy too.

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Christine Gilmore RN

@KickenALSAss

2 years

want to eat in front of others at this point. I will not let this stop me. My friends won’t care. Strangers won’t care. Truly, nobody is going to care. I use a long straw to drink. I’ve been known to drink wine with a straw. Nobody is going to care. I have to put my

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Christine Gilmore RN

@KickenALSAss

2 years

@bsw5020 @sabrevaya @iamalsorg funny story. @revgilly and I each received a package today. He said “I bought you something” as he pulls out an I Am ALS shirt for each of us. I said “I bought you a present too”. He opens my package, same contents🤣😂

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Christine Gilmore RN

@KickenALSAss

1 year

@mhdksafa I have #ALS . There is no cure. It’s at least a $250,000/yr disease. Insurance/Medicare does not pay for caregivers. My husband works, cooks, cleans, and takes care of me. He’s burnt out and dealing with anticipatory grief. @POTUS @GovofCO @RepEpps @RepDianaDeGette @JasonCrowCO

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Christine Gilmore RN

@KickenALSAss

1 year

had a wheelchair like mine. She said that her sister died from #LouGehrig ’s a few years ago. She only lived 2 years from diagnosis. I told her that I also have #ALS . What are the chances that I met her? Tell me again how rare this disease is. 2/4

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Christine Gilmore RN

@KickenALSAss

2 years

face next to the plate to eat. I really doubt anyone is staring and talking about me. I will probably never see those strangers again. I don’t care. None of you should care what other people think. Whether it’s a speech impediment, requiring a cane, walker, or wheelchair,

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Christine Gilmore RN

@KickenALSAss

2 years

I cry for all of the ALS warriors I have met through social media, knowing I will lose many of them before I die. My husband heard me crying. He stripped down to his underwear and held me in the shower. I would like to name every one of you who has inspired me, supported me and

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Christine Gilmore RN

@KickenALSAss

8 months

@AshleyGWinter I introduced my gyno to hormone therapy for vaginal atrophy. She’d never heard of using it for that. Thank you.

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Christine Gilmore RN

@KickenALSAss

2 years

@heidiotoo @7Veritas4 You misunderstand what I am saying. For instance, I have ALS. At some point I will be completely paralyzed. Unable to speak, unable to smile. I personally want people to know my life story and know that I am intelligent. Whether we like it or not, people do judge.

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Christine Gilmore RN

@KickenALSAss

1 month

I can relate to what @limpbroozkit is dealing with. The first 3 years my scores improved. I was in the 90s. 2 years ago FVC was 77. Last year 69. I was using the vent in AVAPS mode from the start because my O2 dropped to the mid 80s at night. As my Buddha belly has become bigger

Brooke Eby

@limpbroozkit

1 month

day 26: an update #breathing #pulmonologist #als #healthupdate

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Christine Gilmore RN

@KickenALSAss

2 years

@7Veritas4 You have no idea how much an honest compliment can mean to someone. I have ALS, and I miss the body I used to have. In 2015, I had a personal trainer who could point out my successes every session. At 49, I was in the best shape of my life. Those compliments kept me going.

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Christine Gilmore RN

@KickenALSAss

1 year

Ady is correct. Those who rely on people to take care of us have family members who will suffer financially, emotionally and physically. #ALS is cruel. Treatments available are minimally effective. There is no cure. #EndALS . @GovofCO @POTUS @RepDianaDeGette @JasonCrowCO

Ady Barkan

@AdyBarkan

1 year

All of us have relied on, currently rely on, or will rely on others to care for us. Caregiving is an essential part of ALL of our lives. #CareCantWait

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Christine Gilmore RN

@KickenALSAss

10 months

How many pALS have to die before we find better treatments, and a cure? @FDA we need treatments approved now. Currently #NurOwn is the only treatment that has shown improvement in function. #EndALS

Eric Kentor

@EricKentor

10 months

Dear friends and family, We write with great sadness to let you know that Eric passed away Friday evening, August 25th, 2023. He died peacefully after enjoying some quiet time with his family in our beautiful home in Bell Canyon. (1/3)

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Christine Gilmore RN

@KickenALSAss

8 months

This should not be happening! Those of us with #ALS should not end have to end our lives when we can no longer afford care.

Leanne Yacyshyn

@leanne_yacyshyn

8 months

Sean Taggert ended his life because he could not afford the care he needed. He was also from BC, also had ALS and also wanted to live to see his child grow up. We must do better. @adriandix @Dave_Eby @shirleybond @PierrePoilievre @steeletalk @LeslynLewis @takovanpopta

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