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Give me all! You're all impression. You're all impression. My name is Lou Barlow, one of your hosts for the Ron Impressions podcast.
I am Adele Barlow, the co-host of Ron Impressions podcast. That was so nice to hear the long acoustic version of the intro song. It's been a while. Yeah, that's the full version as it exists.
I'm hesitant to finish it and really write the perfect lyrics yet, so I'm letting it slowly build for the last almost three years. That shows good restraint. You're letting it breathe. Yeah, I've done some goofy versions of it.
That's the most straightforward version so far. Well, my mom really loves that acoustic version of the intro song, Terat Impressions, and we did that for her today, that intro song. Yeah, I was a little nervous. I'm nervous I've been practicing for the last two days.
I feel nervous too. I even have a little fidget in my hand, a purple fidget in my hand, and Lou and I are wearing, he's wearing a purple shirt and I'm wearing purple, and actually my mom's jewelry because purple is my mom's favorite color, and this episode is about her. Yeah, this is dedicated to Val. This is to my mom.
Is he wanted to make sure the cats didn't get a hold of that ball? Oh yeah, she's like, oh, they could puncture it. I'm like, they sure could. It's so true.
They really could, and I should be very mindful about that, and I will. So if you've been listening to Rom Pressions for a while, or at least the last year, you've maybe heard me talk about what's going on with my mom, who she was diagnosed last October with ALS, also known as Lou Gehrig's disease, and it has been a huge shift for our family, and it's a really, really difficult. It's a difficult club to join for my mom. That's not an easy one, and it definitely was a surprise.
That was not something we were expecting. I mean, ALS is really mysterious, and it's really extraordinary. It's extraordinarily difficult as diseases go. It's horrible.
It really is. There's really no point, I think, in trying to be anything other than totally honest about what it's like to be loving someone who has it, because there's no easy way of saying that this is a very difficult disease, and it's 100% fatal. No one recovers from this. There's no treatment.
There's really, I mean, they, when I went to the Mayo Clinic in Rochester with Minnesota with my mom, they offered these two experimental drugs. Again, they're just experimental that she could take, but they don't actually stop or change the disease in any way. They said they perhaps could extend her life by two or three months. It's rough, right?
It's really rough. And upon diagnosis from ALS, most people live only two to five years after diagnosis. And I believe a person is diagnosed with ALS every 90 minutes, and every 90 minutes someone passes away from it. And I read also that there are 32,000 people, I was in the United States living with ALS.
If you think about that, that's a pretty small number, really. How many people are here in this country? It's also, but it happens, and it happens to people we know. I had a friend of mine pass away from it a few years ago.
Someone that helped me record music. He was a great musician. He was young. And he's a man.
And it does affect men more than women. They don't know why. And he was communicating with me until he died, because he learned how to communicate by eye movements. And he was working on ways to work on music while he was, but otherwise could not move at all.
He was in a wheelchair, right? He was in a wheelchair. He had a reading tube. He couldn't speak.
He came to a dinosaur junior show in Joshua Tree. And that was the last time I saw him. And I have a lot of regrets, because he was asking for me to collaborate with him on some music. And I just wish I acted quicker on that.
Because it was amazing to actually get these beautifully articulate long emails from him. And as I understood it, he was totally wheelchair-bound. So now that it's touched our family in a more direct way, I think we want to do as much as we can for your mom and reach out to her as much as we can. And then also, you've really taken it on yourself to become involved in fundraising for the disease.
It's sadly underfunded. It has had funding cut recently as well. And it also affects a lot of veterans. If there's any veterans out there, this is a fortunate news.
And they don't know why. It's a very small percentage where it's passed down through genetics. But as a result, I think in hearing you talk about your friend, I want to minimize my regrets. I think that's the learning part of it too, is you have that experience and you go, youch, how can I do this a little bit differently next time, if there ever is an opportunity?
And I'm trying to be there as often as I can to spend time with my mom. I fly out to Wisconsin about once a month, if possible, to spend time with my family and to help out and to just be there, be next to my mom and hang out with her and spend time with her. Because that time is fleeting and I'll never get a pack. And it's all very, very valuable.
Yeah, I won't regret the time that I spent. She is fully conscious and fully present in the moment, which is really, really what makes the disease extraordinarily painful. Exactly. So there's an event coming up, actually, this Saturday, today is Thursday, this Saturday, September 6th at Look Park in North Hampton, Massachusetts.
I believe they're happening around the country as well. You can look on the website for Walk to Defeat ALS. We will have links to that in the show notes. So you could find one in your city, perhaps.
I believe there's one in St. Paul, Minnesota, too, which is where I'm from. And I was kind of hesitant to do this walk in the beginning initially because I think I have so much I have anger about it, you know, and frustration about the disease. That I see these images and these pictures from the event and it's kind of meant to inspire people and people are smiling or they're together with their family member or friend who's in a wheelchair, oxygen, all this stuff.
And I just feel so sad when I see that, to be perfectly honest. And then I get kind of mad, like, why are they posting these pictures of people happy? I think they're doing that because they want the people who are living with ALS to feel as much joy as they can for the time they have left. And so I want to help be a part of bringing some joy to someone who has ALS not just my mom, but the people it affects.
And to help raise money for it because sadly that's what we have to do here, right? We just regular citizens have to like raise money for these diseases in hopes to find cures or to make it more livable. So I am team captain of Valerie's visionaries. The thing I've never done, which you know, I'm glad I'm doing it's like, why haven't I done these things earlier in my life?
I don't know, but I'm here now and I'm a team captain for my walking team to defeat ALS. I'll be walking with family and friends. We meet at 10 a.m. If anyone is in the area and I believe we walk at 11, it's probably like 10 to organize.
Maybe there's some announcements. I don't know you guys. This is my first time doing this. And so I'm nervous about it too.
And I don't have all the answers. But I'll have a link if you want to actually join my team to and register to walk with us, you may, that would be amazing. My mom's favorite color is purple. So if you happen to come and you want to wear something purple, that would also be amazing.
And the local representative for the walk reaches out to the team captains about different fundraising things. And one of them was writing about your why, why I'm doing this. And so I wanted to read to you all what I wrote for my why I walk. First I will have a sip of water to prepare myself.
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Learn more by visiting acast.com slash advertise. And see I have a little sticker that says good job. So already telling myself that before I start. So I will also get a tissue in hand just in case I perhaps we'll see what I can do.
So this is what I contributed to the ALS Association for my reason. I walk because I remember being a little girl sitting on the floor of her mother's art studio. My mom is Valerie and my name is Adele. I am her daughter and the youngest of Valerie's three children.
My older brothers are Dylan and Holland. Valerie's art studio was on the second floor of my childhood home in St. Paul, Minnesota. I spent many hours there hanging out watching my mom paint while I made paper collages on the floor.
My baby book said I loved to cut and paste. I don't remember my own art project so much. It was my mom that was captivating. Valerie would stand at her easel, paint brush in hand, or pet dove snoozing peacefully on her shoulder.
Miles Davis quietly playing in the background and me cutting and pasting on the floor watching her. Absorbing an artist whose talent was perfectly obvious to me. I was so proud of what she would accomplish right before my young eyes. Whole scenes coming to life unfolding before me on canvas.
I loved to tell anyone who would listen that my mom was an artist. Indeed, Valerie is dedicated to her craft. Her talents extend much further than the canvas though. She gives her all to each and everything she does.
Valerie has been a true partner to my dad, David, for over 50 years. She's an incredible grandmother, gardener, interior decorator, cook, writer, fiber artist, painter, calligrapher. The list goes on and on when she is curious about something she explores it completely. Her life and the way she has lived has been deeply impactful on me.
She taught me how to crochet when I was only four years old. As a mother myself now, I marvel at what must have been her patience to see that I understood what she was teaching me. I'm so grateful that she took the time to do that with me. To this day, crocheting is where I feel most at peace.
My adult life is filled with art and music, family, and meaningful friendships. Valerie planted those creative seeds in me as her child and carefully tended that garden. I walk because Valerie, my mom, has ALS. Tears immediately fill my eyes, just writing that and saying it.
This diagnosis leaves my mom without the ability to crochet with me, cook her delicious meals for our family, plant and maintain a garden, go for a walk with a family dog, Sammy. So close for my daughter's dolls, travel with her husband, sketch out a poster idea for my business, and on and on. What ALS takes from not just the person living with it, but from everyone who cares for an individual with it is immeasurable. It's painful in a way that leaves me fumbling for words.
I walk because ALS leaves me feeling helpless and I'm desperate to look for ways to be of use when it comes to this disease. If you don't know my mom Valerie, then walk for me. Walk for a stranger you don't know who has ALS. Walk because we can.
Walk today to raise money to make ALS livable and someday curable. I walk for the little girl sitting on the floor of her mother's art studio. I walk for Valerie. It's beautiful.
Thank you, hon. Yeah. So yeah, that was my personal story of how ALS has affected me. Well, I'm gonna play um, this is the song that Valerie would like play to her funeral, but I'm gonna play it for her at least once.
This is gonna be the first time. I've never done a Bob Dylan song before. Probably one of the few people who calls themselves a songwriter that's never played a Bob Dylan song. But the cool thing is that this this song is also my favorite Bob Dylan song.
Well, that's saying something. I really, you know, I do love this song. Yeah, this is gonna make sure I do it perfect if I don't do it perfect right now. No one's gonna know because I'm gonna just cut in an absolutely stunning version of it.
The Oh my gosh, it's only good. It's only good. You do this. Okay.
She's got everything she needs. She's an artist. She don't look bad. She's got everything she needs.
She's an artist. She don't look bad. She takes the dark out of the nighttime and paints the daytime black. You'll start outstanding, proud to steal her anything she sees.
You will start outstanding, I'm proud to steal her anything she sees You will end up peeking through a keyhole down upon your knee Never stumbles, no place too far Well she never stumbles, she's got no place too far She's no about his child, the law can't touch her at all She was an Egyptian ring, it sparkles before she speaks She was an Egyptian ring, it sparkles before she speaks She's a hypnotist collector, you are the walking antique How down to her on Sunday, salute her when her birthday comes How down to her on Sunday, salute her when her birthday comes For Halloween, give her a trumpet, and for Christmas Give her a trumpet, and for Christmas, give her a trumpet That's beautiful! It's a little shaky, I really played it so many times in the last day I just really enjoyed what a beautiful song that is I just know it means something to play it for her I'm hoping she's listening now And I'll play it again Yup I'll even record another version of it, but it's so sad A perfect version, perfect I tore my trumpet myself with my performances Well Valerie would really appreciate that effort She would, because Valerie, oh my god, everybody Going back to Wisconsin, it's been this way since Adonai first met It's been 12 years now that I've gotten to know Valerie And just kind of witnessed and taken in all of the things that she's produced The art that she's made in her life, and it's truly astounding I mean, she just took on a project of doing poems and calligraphy for every month of the year Like making it into a calendar, and she made this, it was her project throughout a year And she diligently would, and I was able to sit with the originals and they were absolutely stunning So she would appreciate my effort, you know, but that's my live version I love that song I do too And I love you Val, and we'll see you soon Yes, and I do want to say before we sign off, thank you so much to everyone who has already donated to my team On our behalf, I'm so grateful and so touched by it I made a goal of raising $5,000 Maybe I'll have raised it, I'm very close, I think I'm at maybe a couple hundred away So hopefully I'll be sailing past that by Saturday And I appreciate all of you, I appreciate the messages I've received There's been many kind emails, Instagram messages, et cetera comments, so thank you very much Give me all your progress, your thoughts, your words, your time Give me all your impressions Your all impressions, give me all your life Meet Shark Cryoglo, the new MedSpa inspired mask with under eye cooling IQ LED technology using high powered LED and deep infrared for visible results in just eight weeks Better aging treatment boosts collagen and is clinically tested to reduce fine lines and signs of aging Skin clearing provides chemical free acne treatment on and beneath the surface and even visibly tightens under eyes in one use Developed with dermatologists for radiant results at home Learn more at sharkninja.ca Do you keep hearing podcast ads? Like this one for example, but always wonder how you actually get involved with them for your own brand or organization? Well, it's easier than you think.
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