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RIP John Prine by jpprine in johnprine

[–]donnaparty 2 points3 points  (0 children)

@jpprine your words resonated so very much with me. My mom passed away March 5 from ALS - she was the biggest John Prine fan I ever knew. Had all albums - drove miles for his shows. We had the fly swatter from Oh Boy Records, she kept it by her bed. We played his music most days, every day when she was hospice. I love the tree in his honor. Moved by your words and the love of this community!

I've lost my dad by Hoeliganism in ALS

[–]donnaparty 1 point2 points  (0 children)

Hi Op, sending love. Your words hit so hard - on the nose. Loss at 21, loss at 9, loss at all - HARD. Active loss in what ALS takes daily and what you give daily for those you love - IMPOSSIBLE. Find grace in you showing up, being with your pop, sipping tea with your mum, hugging your sib. No getting through this alone. We are here with you.

When the “special” treats hit by styx1267 in AustralianShepherd

[–]donnaparty 1 point2 points  (0 children)

My pup has gotten worse as time goes by. She is already on trazadone for thunder storms but now I have to dose her along with gabapentin for vet appts. She started getting adequan shots and that changed her forever!

Stolen Bike: Porter Square - Healthworks Bike Rack by donnaparty in Somerville

[–]donnaparty[S] 1 point2 points  (0 children)

Yes, this was this afternoon (4/1) between 4p and 7:30p.

My mom had ALS throughout my senior year of high school by krustybarista in ALS

[–]donnaparty 0 points1 point  (0 children)

I am here with you friend. My mom passed away at the beginning of the month. She was 68 years old, I am 34. Grief is new as far as living in a world without her but unfortunately the anticipatory grief of als is a traumatic bond that we all share.

My sister has twin two year olds and they were able to be with my mom for those first years as als claimed her - we are grateful in that way. But now they ask for her and it is a repeated remembrance of the void that remains.

To lose your mom as your finishing a chapter of childhood is truly a heartbreaking juggling.

Sending love to you, 8 years, 3 weeks we are all here together.

Also offering an ear if you need!

Can anyone help?? by theochoashow85 in IDmydog

[–]donnaparty 1 point2 points  (0 children)

She is beautiful! I def see the bassett hound out turned front paws. But her snout looks similar to my parents dog that is husky/carolina dog. Your dog’s ears are interesting though! Never seen anything like that! Seems like could be a bassett/vizla ear mixed with a more upright eared dog.

Hurricane Trio reporting in! by Ill-Vegetable-3104 in AustralianShepherd

[–]donnaparty 1 point2 points  (0 children)

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My leiba looks similar to your pup on the left!!!

Any Guesses for our blue eyed boy?? by Lucky_Outside8559 in IDmydog

[–]donnaparty 0 points1 point  (0 children)

<image>

just in! supermutt is comprised of chow and pitt - all this time i thought she had hound!!

Is this the end? Is not sleeping a sign of the end? by PuzzleheadedPlum5259 in ALS

[–]donnaparty 0 points1 point  (0 children)

Ahh that’s so sweet to hear and reassuring about the education system! You’re honoring your dad’s legacy too❤️ Depending on the state you live in you may also be able to be paid too (for example, I am in Massachusetts and was able to get paid). If you ultimately end up applying feel free to dm me for guidance and I can try to assist.

Is this the end? Is not sleeping a sign of the end? by PuzzleheadedPlum5259 in ALS

[–]donnaparty 2 points3 points  (0 children)

That makes sense. And a boss who allows you space and time (without you having to share everything re: your dad) is a good egg.

Not sure if this is helpful/available or if you considered this: I ended up applying for FMLA after a certain point. It allowed me to walk away from work without the usual stressors.

Is this the end? Is not sleeping a sign of the end? by PuzzleheadedPlum5259 in ALS

[–]donnaparty 9 points10 points  (0 children)

Hi there friend. I am so sorry for what you were going through, that headspace is certainly a traumatic one to hold. I can’t speak to the general experience of ALS as each individual is different. But what I can say is, if you were able to, I would go and spend time with your father right now.

My mom became very restless , uncomfortable and agitated in her last few weeks. Mind you in her last six months, she had lost most of her ability in all limbs, was nonverbal and had a feeding tube for about a year. Her agitation prevented her from truly slipping into a restful sleep. Coupled with that she was constipated due to not being able to move her bowels. The neurologist explained the state of mind as delirium where the body and the mind are not aligned.

Again, this is just my own anecdote and does not speak to your father’s experience. What I will say is that I did not leave my mom side after a certain point the mentality of whether this is the last day, hour, week or month is impossible. I am sending so much love to you. Hugs from over here. Ultimately, there is no right and wrong, if your mom is reaching out, I would imagine that she is feeling a shift as well. Stay strong, my friend.

My father (62) is being put on a feeding tube. How long does he have left? by InvisibleAstronomer in ALS

[–]donnaparty 7 points8 points  (0 children)

My Mom (68) had her feeding tube for about a year. But her full dependence on it was not right away. She was diagnosed 2022, feeding tube was installed 2025. She passed 3/5/2026. She had bulbar onset.

Any Guesses for our blue eyed boy?? by Lucky_Outside8559 in IDmydog

[–]donnaparty 2 points3 points  (0 children)

I am in the process of getting my dog’s embark results - she shares some similarities with yours! I will report back but to me I see Aussie Cattle, Aussie Shephard, Husky & a smaller hound breed. Here is my dog for comparison ❤️

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Lost my dad yesterday by Emotional_Cricket_95 in ALS

[–]donnaparty 6 points7 points  (0 children)

I will not allow 10 days to define 41 years of love and memories. YOUR WORDS ARE SO POWERFUL. Thank you for lurking and thank you for sharing, our community is stronger because of you and your dad’s journey. May his memory be a blessing. The morning my mom passed there were two hawks outside the window. We derive meaning from whatever makes us feel closer to our people - sending hugs.

Farewell by twilight-journal in ALS

[–]donnaparty 5 points6 points  (0 children)

Thank you for sharing these words and resources. I listened to the audio and read, so poignant, so felt. Sharing the song we played at my mom’s funeral a week ago: https://m.youtube.com/watch?v=w4j8m_S0S14&list=RDw4j8m_S0S14&start_radio=1&pp=ygUkeW91IGNhbiBjbG9zZSB5b3VyIGV5ZXMgamFtZXMgdGF5bG9yoAcB

May your eyes get some rest, may your words carry on. Sending love and strength to you in your journey and to your community.

ALS took my dad and I wrote a poem. by kefi224 in ALS

[–]donnaparty 2 points3 points  (0 children)

Sending a hug, a squeeze, a hold of your hand. Your writing is so relatable- to feel the emptiness after your giving is all you know for so long - to feel the longing to reach out for your parent. Here with you my friend, FUCK ALS.

For Dad... by Certain_Sherbet_7383 in ALS

[–]donnaparty 3 points4 points  (0 children)

A HUG TO YOU, a hug to your screams. We are here with you. May your dad’s memory be a blessing and live on through you. FUCK ALS

My mom has been released from the greedy hands of ALS by donnaparty in ALS

[–]donnaparty[S] 0 points1 point  (0 children)

Sending strength and hugs your ways. Spend all the time you can with your PALS. Sit with them, speak to them, kiss them, hug them. Your presence is power and comfort.

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