Inside Many Shades of ALS: An Intimate Roundtable

Here, I’m joined by six members of Many Shades of ALS, a community team within I AM ALS, for a roundtable that breaks the stereotype of who gets ALS. 

We talk honestly about “ghosting” after diagnosis and why people disappear even when they care, then get specific about what real support looks like. We also name the moments that sting most: when people speak to our caregivers instead of speaking to us, or when impatience turns a conversation into a dismissal.

Many Shades of ALS also pushes the bigger fight forward. We dig into awareness gaps for people of color, the need for natural history studies, and why diverse ALS clinical research is not optional if we want better treatments and, ultimately, a cure. 

If this conversation changes the way you think about ALS, help us widen the circle: subscribe, share this with a friend, and leave a review so more listeners can find these stories. Thank you for listening. Hugs, Lorri

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Transcript

Welcome And Why This Matters

Paul Carey 0:09

Hey, I'm Paul, and I'm Christian. Welcome to I'm Dying to Tell You. Inspiration shared by our mom who is dying from an LS.

Christian Carey 0:16

There's no cure for our mom or anyone else with an LS. But right now, she's on a mission to find and share stories of inspiration.

Paul Carey 0:23

Coming to you from Cincinnati, Ohio, we're happy to introduce the one lady we've both loved since the first day we laid eyes on her. The Queen of the Queen City, our mom, your host, Lori.

Lorri Carey 0:48

Hi,

Introducing Many Shades Of ALS

Lorri Carey 0:49

I'm Lori, your host of I'm Dying to Tell You. Thank you for being here. This episode is going to drop in May, ALS Awareness Month. And I think it's perfect timing to introduce you to a special group within our community. And that is many shades of ALS. Many shades of ALS. It's a community team within I Am ALS. A group of volunteers who have come together and they are setting out to amplify the voices and experiences of people of color who are living with and impacted by ALS. They take a look at the unique mental, physical, and social health challenges that they face. And they come together to not only help other people, but to educate others as well. So today I am talking to a group of them who are all actually living with ALS and are members of the many shades of ALS community team. I am so proud of everyone in this group for continuously letting other people know that ALS can literally hit anyone. No matter where you live, no matter where you come from, ALS has no boundaries. So I'm gonna do like a round table discussion with six, and I will have each of them introduce themselves so that you can match their voice with who they are. But joining me is gonna be Bernadine, Perfecto, Randy, Melody, Steven, and Will. And I love that they all came to me with topics that they wanted to discuss during this episode. So let's jump right in to this roundtable with many shades of ALS. Let's go. As

Meet The Roundtable Voices

Lorri Carey 3:32

we begin, I would love for each of you to briefly introduce yourselves to our listeners, uh, your name, where you're from, how long you've had ALS, and how you identify culturally or racially. And I just think it's important that listeners hear the beautiful diversity represented here. Bernadine, you want to go first?

SPEAKER_01 4:02

Sure.

Lorri Carey 4:03

Hey, welcome back to the podcast, by the way. Thank you, second time around.

SPEAKER_01 4:08

Yeah. My name is Bernadine Ackridge Okeke. I am from Orlando, Florida. I spend like 50% of my time in Florida, the other 50% of my time in Lagos, Nigeria on the West African coast. I have been living with ALS now for the past seven and a half years, although I think I've been living with it longer, but it took two years to get a good diagnosis.

Lorri Carey 4:39

So that's fake. Yeah. Okay, great. Welcome, welcome, welcome back. Perfecto.

SPEAKER_06 4:45

I am perfect. I am from the vision memory land. I was dying on December twenty nineteen. I had three good for many, many years. And every day I went to say the same thing. I don't know. I am for a weekend. I really thank you for your service. I believe the army.

Lorri Carey 5:40

You were in the army.

SPEAKER_06 5:43

I was exposed to many things.

Lorri Carey 5:55

For 29 years you were in the army, and you were saying that you were exposed to a lot of different things, and I assume you're thinking that maybe could attribute to your alias.

SPEAKER_06 6:07

Yes. And when I joined Imagine giving all the stress, you get a second in two days. You took a stip. You got two shots. You took another slip two shess.

Lorri Carey 6:42

Oh. Wow. Yeah. So in two days' time, you are given just a slew of different shots vaccines. And I know I've read that that could be um related to ALS as well. So okay, well, thank you for being here, Perfecto.

SPEAKER_06 7:02

Thank you for inviting me.

Lorri Carey 7:05

Uh of course. Okay, Randy.

SPEAKER_03 7:09

My name is Randy Gregory Jr. I was diagnosed with sporadic AL. That's in 2011. I live in Baltimore, Maryland. I am a black American.

Lorri Carey 7:21

And welcome back, Randy. Kid to have you to be a part of this. All right. Melanie and Frank.

SPEAKER_00 7:32

Hello. I'm speaking for Melody in these uh her words.

Lorri Carey 7:37

Okay.

SPEAKER_00 7:39

My ALS diagnosis came on March 8, 2023. It is sporadic in nature, and currently uh she's living in Akron, Ohio. And I'm her husband and a caregiver, and I will be her translator.

Lorri Carey 8:01

Okay. And welcome, Frank and Melanie. Appreciate you both. Okay, and now Stephen.

SPEAKER_05 8:08

Hi, my name is Stephen Frey. I live in Croton on Hudson, New York. I have been associated with ALS since 2014, when my mother was diagnosed. Basically, we went through six years as caregivers for mom. And when she passed, right at her six-year anniversary of her diagnosis in 2019, we said, Praise the Lord, hallelujah to that. It's over. And um we're going on, and three years later, I was basically diagnosed with ALS, and we found out that it is familial. I'm the only one who's done genetic testing, and we have the SOD1 gene mutation.

SPEAKER_07 8:58

Yeah.

SPEAKER_05 8:59

I'm one of the fortunate few that is able to be on the tofersin, which is now known as Kassadi. I have ALS, but uh the progression has been slowed, which is what the treatment is supposed to do.

Lorri Carey 9:14

Yeah, well, thank you for being here. Yeah, I've heard great things about that drug and then it's been helping people. So it's gonna pray, it's gonna continue to help you as well. Okay, Will?

SPEAKER_04 9:28

Hey, Phil, I live in Washington, DC. Um, I was idle in 2006 in August, so uh this year would be 20 years. I am African American, and I was raised in Localana and came to Howard University in my younger years. But I haven't met anyone that is SOD one that's African American, and that's why it's important to do the natural history study so we can have that database for people of color to know exactly uh like if they're in the region, you know, it's sporadic uh throughout the United States or it's familiar with uh diagnosis on the in the north or south, are they in Africa, or they in the Caribbean? So it's really important to get natural history side design.

Lorri Carey 10:39

Yeah, great point. Yeah. Okay, let's get into our discussion here.

Ghosting After An ALS Diagnosis

Lorri Carey 10:46

The first topic I want to talk about is ghosting after diagnosis. You know, I've had ALS for 22 years, and I have seen that, and I have seen just people react differently. It is interesting the behavior of others who aren't living with the disease, how they act towards someone, you know, that has ALS. So have any of you experienced people pulling away uh after you were diagnosed? And can you tell me what that felt like, Melanie?

SPEAKER_00 11:28

Melody's words. It felt like I had done something wrong, and subsequently it made me feel as if I needed to reach out so they wouldn't know I was still alive amidst my diagnosis. So I created an email that talked about the ways in which my family and I were adapting and the things I was doing.

Lorri Carey 11:56

So she felt like she hadn't been the one to reach out to say it's okay to talk about it.

SPEAKER_07 12:04

Yes.

Lorri Carey 12:04

Yeah, yeah, yeah. And I think that's a great idea. And you know, I've seen people shy away, and I think it's really that people are really good and they do want to help and they want to understand, but when they're faced with something that they're not familiar with, they don't know what to say, they don't know what to do. So they end up doing and saying nothing at all just because they want to be super cautious, you know, to protect you and your feelings. So um, so I'm glad that you did that. Like put it out there to them first. Yeah. Melanin, did you have anything else you wanted to say on that before I asked someone else? No. Okay. Okay, okay. All right, okay.

SPEAKER_04 12:51

Will yes, I have experienced those things throughout my years. And a lot of it, I think people disappear because of fear. You know, ALS makes people confront mortality, and that can be uncomfortable for people to come around. You know, a lot of people, even my mom, I talk to mom about, hey mom, you know, we should um we have a a cemetery for our family. Or our father's mom. I'm like, mom, I think you don't want to have a a white cat for some mom like that. I don't want to hear about that. But even with friends, you know, it's like people are afraid to confirm that and some people just don't really know what to think. So they say nothing and they don't come around and they go. But I've had a lot of experiences with uh even coming to a um nursing home. I was in a nursing home during COVID. And even before that, for five years, only my friends that were like my rock, like the roots of a tree. Those are my friends that uh really have all cared about me. And still comes on to the day. But the other friends are like, you know, I always thought it was because they have family kids, they got their own marital problems, but that's not really the case.

Lorri Carey 14:28

Yeah. Yeah. Interesting. That's interesting. Well, I never thought about it that it could be fear, you know, not even for your situation, but for just thinking about mortality in their own life. So yeah, it could be uncomfortable. So okay, Stephen?

SPEAKER_05 14:48

Yeah, when um Wilbur mentioned fear, brought home to me what is going on with my children. Uh, because they want nothing to do with ALS. And when I think about it, it's like, how could you guys not want anything? My children were the youngest of my parents' grandchildren, of their 12 grandchildren that were saw their grandparents all the time.

unknown 15:17

Yeah.

SPEAKER_05 15:18

So they went from seeing their grandmother run around after them, chasing them and jumping rope with them to where they had to help basically do the caregiving and custodial care for her. As I said, when it was over, everybody was relieved. Now they have to do this through the same movie again, the bad movie, and this time it's for their father. And in the back of their head, they've got behind them that I might have it too. So that is the fear that I see with them wanting to keep their distance and really don't want to get involved so much in it. They'll come out and support the walks and getting getting me to the train station or the uh the airport.

Lorri Carey 16:09

And your perspective on your family that has the one of the ALS genes, you know, that's different. And for your children to be preoccupied in their mind about their future is perfectly natural, and you know, everyone deals with things differently. And if they were to be totally active in the fight right now, it might not allow them to get an escape from it, you know, because it's all in their mind in a different way, you know, so heavily. So all right, perfecto, what about you?

SPEAKER_06 16:50

I am not experienced ghosting when I was diagnosed my son schooled family meetings with my siblings, nieces, and nephews, and he pretty much kept it simple. Existed, my family and friends have become closer.

Lorri Carey 17:33

Okay, good. Your family and your friends have become closer. Um that's good. And you know, maybe setting the tone in the beginning is like a helpful tip to families to say, this is the way it is, you know, I want to talk about it, I don't want to talk about it, or you know, whatever. This is the new normal and this is what's gonna happen. Um, so I like that you brought that up. That being proactive and kind of setting the groundwork from the beginning can be helpful. Yeah. The next one was what do you think, what do you think it is that makes people disappear? And I think we've talked about that. Fear, discomfort, not knowing what to say. What

What Real Support Looks Like

Lorri Carey 18:19

does real support actually look like from friends and family after diagnosis? And I know I've talked to many people on the podcast, and a lot of them have said, just treat me the same way that you always have. So if you come over on Sunday and you watch football, still come on over on Sunday and watch football. Like keep it as normal as possible. Anyone have any thoughts on that, Randy?

SPEAKER_03 18:56

People can stay connected about the same things that connected us before ALS. We are the same people who we were before ALS, probably a better person, but more considerate to the challenges in life.

Lorri Carey 19:10

Yeah. Talk about the same things, do the same things if you can in a different way. You know, get to the ballpark in a different way. Yeah, I like that.

SPEAKER_01 19:25

Well, um, I would say that um I find the best way to deal with this is like you said, to just uh keep dealing with it. You know, uh I find that uh among my circle, their behavior patterns really haven't changed much. We still have Thursday lunch. Uh I might be able to lift the fork and eat with them, but they will eat and then they know that my caregiver is going to put the food in my mouth, and everybody ignores the caregiver as if she's not even there, and the conversation continues. And on Sundays, uh, when we have our uh group meetings and so on and so forth, everybody shows up. So I guess um the caregiver or the realizing yes, I have a challenge, but no, it does not affect my cognitive ability.

SPEAKER_07 20:17

Yeah.

SPEAKER_01 20:18

I could still do things that I was doing before. It might take me a little longer to say what I need to say, but you wait and uh allow the sentences to be completed. And then of course, I also kept myself extremely active for as long as possible, which basically means the exercises and the traveling. And the traveling is a challenge now, but um I do it anyway so that um I can stay engaged. Because I believe part of the challenge for us with ALS is also keeping ourselves engaged so that people don't feel sorry for you because they see that you're active. And as long as you're active, they will stay active, you know. I think uh they they react to you the way you react to yourself. Oh good point. I'm not part of the pity party.

Lorri Carey 21:14

I know you're not I know that I learned that from you a while ago. Um yeah, great, great point. Yeah. Has anyone surprised any of you with approaching you in a really positive way right off the bat?

SPEAKER_01 21:38

My children did. I was shocked. I have my children are between the ages of 44 and 32. Two boys, two girls. And the way they rallied around the whole ALS thing, if one person wasn't there, they have a group chat of their own. And the part of the group chaps subject matter is their mother. And I'm just like who's traveling with her this this time around? Who is doing what? Has anybody gone to see her this weekend? And I'm telling you, when they were teenagers, I did not think these brats would be this close to me as adults. So I'm really quite proud of what's and I'm happy but that's the point. Really and truly you can't beat it.

Lorri Carey 22:29

Oh absolutely yeah I agree. Yeah my guys are frightened I get that Rianji did you have something that was a really positive impact in this way I would say amazed me.

SPEAKER_03 22:44

Former co-workers family and friends with an ongoing GoFundMe effort for over three years is truly a blessing.

Lorri Carey 22:55

Hmm yeah absolutely ALS is expensive and that's really heartfelt and amazing that your coworkers and your friends would do that. Yeah.

SPEAKER_06 23:10

Perfecto my son is a medical social worker and when I go to the clinic he does all the talking because he knows the terminology and he we he used to work with the prison children and he would fight to the name for those children and he does this for me yeah that's great he's in your corner and he's your voice your interpreter as far as medical jargon and all that um so it's great yeah Steven did you have your hand up for that one just taking backing on uh what Randy said I ran I'm running a GoFundMe and it was real interesting to have kids when I say kids I was their baseball coach oh nice dropping they're dropping in in funds for the GoFundMe I see them in the in the in the hardware store or locally Mr.

SPEAKER_05 24:45

Frey how are you is everything oh wow you know we're quoting for you we saw you on your Facebook and we saw what you're doing you know and I have just it's basically the people around me friends everybody has rallied around to basically because they they know that I went through it with mom and now I'm going through it again and people have really almost surprised me as to where they're where they were coming from yeah and how they react hey a coach is powerful my husband was a hockey coach all the way you know when the kids were little all the way through high school and um it's a very influential position and just the way that they're treating you now shows that you had a great impact on their life.

SPEAKER_03 25:37

Yeah Randy and B head coach knows my story we often exchange emails I coached college basketball. Wow where did you coach at Randy DC DC cartonsville for 20 years.

Patience, Speech Changes, And Respect

Lorri Carey 25:56

Wow that's amazing the next thing that we wanted to talk about was I am not embarrassed about my illness and neither should you be so can someone share an example of when you thought that someone was embarrassed about your ALS when you are having a conversation and the people feel uncomfortable so when you're having a conversation with someone you feel that they are uncomfortable and do you think it's like even me who I talk to a lot of people with ALS and sometimes because I haven't talked to you before and I'm not familiar with your voice your cadence of your speech it's harder for me sometimes to understand words that you're saying maybe not other people on the call because they have heard you speak before so do you think that they're just nervous about not being able to understand and they feel they feel guilty. Not embarrassed but they feel guilty could be could be yeah yeah but I can see how it can make you feel like they're embarrassed or not quite sure what to do with the whole situation. So yeah good point.

SPEAKER_01 27:38

I think some people are just rude and uh uh I believe yes yeah they do not want to wait for the sentence to be completed they're either in a rush or they do not take a little bit of extra time to understand that um your pronunciation is slipping or that the B's have become Ps in the way you're speaking etc and um as a result they're just plain rude and uh they're talking to a caregiver when I'm sitting right here and of course you know I'm going to let you know that I am not deaf dumb or blind and that you really need to speak to me because I can speak for myself. But instead of taking two minutes it might take me four to get the message from us.

Lorri Carey 28:31

Yeah yeah that's true yeah I can see that yeah like uh uh uh uh uh okay now anyway yeah right uh all right let's see Melanie Melanie says that uh she feels some people uh uh embarrassed because they can't understand what she might be saying yeah okay and they don't know what to do with that you know and I think they they know it's a struggle for you to talk and so they feel bad like asking you to repeat yourself they know it's taking energy uh but yet they want to understand because they want to be able to react in an appropriate way so it's tricky all the way around but I think what I'm hearing is you all saying take the time whatever it looks like be patient and try to understand and don't give me the oh oh yeah you have no idea what they're saying what you're saying because I feel that too my mom used to not be able to speak English she only spoke Spanish and then she came here and she went to the into the army and anyway she married my dad who was white and um she ended up in Ohio for years and years and years and when she would go back home to visit her whole family spoke Spanish and I found my mom going oh and I'm like you don't understand I'm like I can tell you don't even understand what they're saying anymore right and she's like nope so people can tell and they can feel it yeah all right Will yeah I was gonna pee back off what Ben is saying even the physician came by my house about two weeks ago and I was talking to him about my hair and then he turns around and talks to the nurse and ignores what I'm saying until I demand and tells him hey hey what you say in the wrong I really want to talk to you my nurse doesn't know everything that's going on with me at that moment and the doctor's just impatient I'm like well you can talk to me you're right beside me okay so yeah I've had experiences even with doctors being impatient about me and I can put a big bumper sticker or something on my head saying be patient when I talk when I talk to you can get to understand me.

Purpose And Representation In ALS

Lorri Carey 31:31

Yeah yeah yeah yeah oh okay so how has owning your diagnosis publicly you know doing what we're doing here you all are a part of many shades of ALS through I am ALS and you're active there in the community and putting yourself out there how has doing that changed your confidence or your identity you know when we talk about feeling embarrassed or anything how has that changed your confidence actually being a member of the many shades of um ALS and this organization has given me a sense of purpose um within this particular issue.

SPEAKER_01 32:26

You know I was a totally healthy person. I had no illnesses I had four children with natural labor da. And then I come down with this and I just didn't understand where it came from and the inclination was to go and hide in a shelf. But I think when I found this group and started listening to what everybody else is dealing with and the becoming part of the letter writing and the storytelling and just the meetings etc it gave me a sense of purpose and an identification outside of just being somebody you know friends that I do other things but it gave me you know something to focus on. And even though I might not have been many getting to the meetings you know lately I keep track of everything that they do you know online somehow you know because um I've even gotten my sisters etc you know to take a look at what's going on I'm sure someone's gonna listen to this podcast and tell me that they've heard it but um it's given me you know like I said number one it's taught me a lot about what ALS is because I never heard of it until now and then it's giving me a reason to just keep pushing.

Lorri Carey 33:47

Yeah perfect I love that yeah and as I mentioned earlier I was talking to a few girls for her ALS story yesterday and they said the same thing. You know her ALS story gave them a community of like minded people in their situation of the same age and it gave them a purpose so I love that.

SPEAKER_03 34:13

Okay Melanie and Frank it has continued to change the way in which I show up in the world whether I'm in my mobile chair or attempting to sound out a word I am here and that keeps me present oh perfect I love that yeah joining the many shapes of ALS team helped me see how valuable I am within the ALS community valuable because I am part of a group of people who maybe think that it is not possible for ALS to touch. The many shapes of ALS team has helped me navigate ALS differently by becoming more informed about clinical research and its importance to finding cures for diseases better no cure yeah very important yeah thanks for me and here thanks for that well yeah um being a part of many things of AL as uh remind me that I'm not alone as a black man living with AOL people are newly diagnosed that are young and um I just want you people to feel like they've been seen and I want them to feel hope when they get diagnosed I mean it would mean everything for me for future patients of colors who never hear phrases from doctors or neurologists or whoever they normally say um you don't look like someone who would have ALS I mean if you look at the stat from the CDC it's like what five or ten percent of people of color get it but how many doctors and neurologists in the world even in the United States these people of color who have ALS I just want them to know that ALS does not discriminate and that's what I like about many say of uh ALS that we actually evolve and we want every clinic to know that it's not just a white man's disease it falls upon every person of color no matter where you come from in the world. Yeah yeah thank you for being a part of that Will you're so right ALS doesn't discriminate age anything um even on the podcast I've talked to a 10 year old who was diagnosed at seven I've talked to a mother who has lost twins both daughters only children to ALS all different ethnicities all different races it definitely doesn't discriminate Rianti being a part of the many shades community helps me by working with others to shed light on this community additionally being a resource for others to this community and the ALS community in general is a blessing to serve when I was diagnosed I was not familiar with the many shapes ALS community how did you find the community Randy through IMALS organization.

SPEAKER_05 37:57

Oh okay through IMALS perfect yeah okay kid Stephen yeah you know being a part of many shades I um was introduced last year when I came to the IMALS I guess that was the conference they had uh in May but I was shocked because I did not really get involved so much when my mother when we were going through it with my mother it was either church or or coming you know doing something else pertaining to the church but getting into the ALS and seeing that it was taking twice as long for a person of color to be diagnosed and so in order for there to be any type of change you gotta get involved and let your voice be heard I mean did all my crying for ALS with mom now I'm speaking out you know and I'm glad that I got a couple more minutes left uh added to me because of the treatment I'm on because we need yeah yeah well it's awareness and it's what's needed and people like you who are willing to speak up and share their personal business you know is what it's going to take.

Lorri Carey 39:16

So I really appreciate you so much.

ALS Affects Muscles Not Minds

Lorri Carey 39:20

Okay let's go on to the next uh segment for those that might be listening in if you're not familiar with ALS ALS typically only affects your muscles physically and does not affect your cognitive ability typically there is a small percentage of people who will get frontotemporal dementia with ALS that can affect your mental clarity but for the most part those living with ALS it's a physical thing and not their mind so I know that you all wanted to bring attention to this that ALS only affects my muscles not my mind what does that statement mean to you personally does anyone want to comment on that certainly I'd be happy to okay I started a microfinance bank I was diagnosed with ALS it is now four years old I've been dealing with ALS for well over seven seven years now I sit on the board of other companies um of course I'm active in my church etc and I seem to be able to do mathematical calculations much faster now without a calculator Gen Z take note than I did before.

SPEAKER_01 41:01

So what it seems to me is that what I lost physically I have gained mentally because I feel as if I'm even sharper. And the people around me have said the same thing that's my ability to retain information um my ability like I said calculate numbers I mean not six times five but large numbers and uh the ability to hear it's as if my hearing has become extremely acute so I really like to let people know that yes I have a physical challenge but I am mentally all here you know so don't discount me as a person.

SPEAKER_03 41:46

Yeah absolutely I don't know personally my mind is still sound thank god though I cannot move I still love basketball games golf tournaments helping others good hip hop music mafia movies and hope for a better world including a cure for ALS yes I agree even sharper interesting yeah I wonder Randy Bernardine if it's something that you know like for Randy because you are so limited physically the fact that you cannot physically move that you're more aware you're more in touch you're more in tune and your mind is able to connect better faster I don't know just maybe like you have more mental space for Nadine to like yes do the mathematics yeah interesting I don't know why it is but um it just seems to happen and um I'm very aware of my surroundings I'm even more acute of my surroundings even distances small distances like inches so that my chair doesn't hit the side of the table you know and as a result of that I am I live in the present so I don't dwell on the past I don't worry about the future I deal with the here and now and I think that keeps me it keeps me sharp.

Lorri Carey 43:35

Yeah interesting and even like like you said with your mobility and you know looking at inches and knowing if you're gonna fit or whatever it's almost like you become like an engineer you know looking for all the different hacks. I was saying I talked to the girls yesterday uh on her alien story and one of them fell and I said well how did you get up she said well I have figured out a way If I crawl to this corner, I can wedge my feet into this corner and I can pull up by this bar. You know, she had it all calculated that this is the only way I can get up if I fall. And you know, that's what she did. And she's like, no, I'm good, okay. So your mind just is able to work better. Yeah. Um,

Stay Included With Simple Invitations

Lorri Carey 44:26

why don't we offer some tips to people who we know it's important for others to continue engaging us in real conversations, decisions, leadership, social events like we want to be included. What are some tips to people that will allow you to feel included even though things might look different?

SPEAKER_01 45:02

It's a good question. I don't know how to answer it.

Lorri Carey 45:05

Yeah, I mean, I would say if you would have offered for me to be included in the past, go ahead and make that invitation. Go ahead and extend the invitation. No, I probably will not join the pickleball league on Tuesday. However, I might go take my walker, walk around the court, sit down, vet on who's gonna win, bring a snack. You know, I might join you, and I might be a spectator, even though I can't play pickleball. So I would say, as an overall rule, go ahead and ask. What is it to hurt to ask? Steven?

SPEAKER_05 45:55

For me, I keep myself involved. Uh, it may take me twice as or three times as long to do it, but I'm gonna do it until I can't do it anymore. By keeping myself involved, I'm keeping the mind going. Yeah. Uh, because I was a person that was on the 430 train into Manhattan doing here, running this project over here, running that. And I I so I can't sit still. And I'm glad that I'm able to move. I will find a way to keep involved, you know. As you said, walk around the court with your walker. Um do what I can do.

Lorri Carey 46:37

Yeah, so don't underestimate what you can do and and give you the chance to say yes or no. Yeah. Okay, Randy.

SPEAKER_03 46:49

Exactly. Laurie, extend the invitation, I will make the decision.

Lorri Carey 46:55

Yeah, that's simple. They're you know, wanting to let you know we love you. You're welcome to be a part in any way. So if we're talking about reaching out, another thing, topic that you all asked to talk about was a call, text, or an email would mean a lot. So this is a continuation of that, you know, reaching out to you. So if someone is listening and they are hesitant to approach you or someone with ALS, what would you tell them?

SPEAKER_04 47:37

Well, I would say like if you don't know what to say, to say this, I'm thinking about you, and that's enough. You know, just a call to let people know that you're thinking about them really means a lot, you know, because silence feels like abandonment, and then we're going to go thing on that issue. You know, a simple message, you know, it feels like love. Like if somebody's texting you saying, Hey, you know, how are you doing today? And just, you know, did you see the game last night? You know, it feels like love that it's still there, and it's just complete power.

Lorri Carey 48:23

So yeah, yeah. You know, great advice.

SPEAKER_04 48:27

So staying connected in simple ways. In simple ways, is it the text? It means a lot.

Lorri Carey 48:35

Yeah, simple text. Perfect. Let's talk about many chains of ALS. Specifically, you know, has the group helped you navigate ALS differently? How does that made you feel living with ALS, this particular group and being involved? Okay, Steven?

SPEAKER_05 48:56

Giving me a group of like-minded people to basically approach an issue that is that I'm very passionate about, and to know that together we're dealing with this, and we're we're like-minded, and we know we see this, they see the same that I do, and we want to do something about it, and that's what I see as motivation to keep coming back. Yeah, because I want to see something happen and it will happen.

Lorri Carey 49:28

Yeah, yeah, I love that. Perfecto.

SPEAKER_06 49:32

I became active in the endless community because I did not know anything about this, but I read everything I could get my hands on about this. So I saw this my son sometimes he gets something that I did not and sometimes um I guess something hidden.

SPEAKER_07 50:23

Yeah, yeah.

SPEAKER_06 50:24

Um he has attended uh my in this group.

Lorri Carey 50:36

So many shades of ALS has been very helpful as far as educating yourself and educating your son because you two share information back and forth, and you didn't know anything about it when you were diagnosed. So being in the community has been really helpful to you in that way.

SPEAKER_06 51:01

Yes, uh like when do you know committee silver?

Lorri Carey 51:09

I do not know her. Oh, I mean I'm getting to know her, right? Yeah.

SPEAKER_06 51:14

Okay, when her product was diagnosed with this she called it in this association and they in this association called me and I said go ahead, give them my personal number and they didn't and we have become very close, a matter of fact. My wife got a text from her mother today.

Lorri Carey 52:10

Oh, that's awesome. I love that. Yeah, there are blessings that come out of this, that's for sure.

SPEAKER_06 52:22

I am not shy, Abba, token, above, any okay, good when they committed mother called me because our brother was anticipated all the time, so I took the what I do my wife said I mean if I am embarrassed as in no.

Lorri Carey 53:13

Yeah, that's great. Oh, you're helping other people, that's for sure. Okay, Melanie, did I see you um working on an answer for something? I don't want to miss you if it's taking more time to prepare an answer. Um, I'm gonna jump to Will and I'll I'll check back with you. Okay, Will.

SPEAKER_04 53:34

The question was how many sayings of ALS impacted me?

SPEAKER_07 53:41

Yeah, yeah.

SPEAKER_04 53:42

Okay. Um, but I was gonna say that going into change how kind of like how I see myself, I realized that my voice matters, you know, not as just a patient or I mean a personal level of illness, um, but as representation of the group, like, you know, I want my voice to be heard and seen throughout our group. You know, when we have new people come in, you know, I want people to know that you know, basically they're not alone in this fight.

SPEAKER_07 54:19

Yeah.

SPEAKER_04 54:20

So this group has really helped me navigate you know that well for cultural understanding and kind of like a experience between all of us in my group. So one word that I can say is belonging. I feel like I belong here. And this is my sense of purpose, yeah.

Lorri Carey 54:47

Yeah, that's great. I love that. It's beautiful for sure. Oh well, I want to make sure she has a chance to speak. So if you want, if there's something you want to share about many shades of ALS, if you want to work on them, I'll start the um, I'm dying to tell you questions and I'll come back to you. Okay, okay. All right, so perfecto. Let's start with you.

What We Are Dying To Tell You

Lorri Carey 55:26

At the end of every episode, I ask, what are you dying to tell us? So, perfecto, what are you dying to tell us?

SPEAKER_06 55:34

I am very telling that I am here. In me. I do the place.

Lorri Carey 55:52

I love it.

SPEAKER_06 55:53

All right, we're gonna put your number out there. It came with this ring. We give it. I am here for everyone.

Lorri Carey 56:09

You're sweet. You're here for everyone, you're here. Call you, text you, email you. I love it. Yeah, that's great. Bernardine, what are you dying to tell us?

SPEAKER_01 56:21

I'm dying to tell you that ALS, uh, although fatal, it is still functional as long as you stay busy. And uh as I like to tell everyone, do not be afraid. Go out there, live your best life. As much as your body allows you, do whatever you need to do, stay in touch, stay active, do not shrink into your room because people tend uh, you know what they say, um misery loves company, but it really doesn't. People will abandon you if you become miserable. You really have to get out there, you really have, and it's a struggle. There are times when you really just want to be left alone, but do not be alone. So that's basically what I'm trying to tell any and everyone, especially newly diagnosed individuals. Just put yourself out there no matter how hard it is, because it gets easier over time. Yeah, yeah, it gets easier.

Lorri Carey 57:29

Yeah, so uh your wisdom. I always enjoy enjoy talking to you. So okay, Stephen, what are you dying to tell us?

SPEAKER_05 57:44

I'm dying to tell you that it's 2026, and if color was not an issue, this disease might have been cured already. That's based on things that I have seen, things that I'm reading, looking at many things going on, and uh basically I'm here to see if we can get over that and find a cure for this disease. Because when everybody else is done with it who has sporadic, my family just puts a period at the end of the page and turns it and starts a new chapter.

SPEAKER_07 58:25

Oh, sorry. Yeah.

Lorri Carey 58:27

Well, you all are doing great building awareness that ALS can affect anyone, and so I'm sure your message is being heard, and I hope it continues to be heard. Okay, Randy, what are you dying to tell us?

SPEAKER_03 58:43

I'm dying to tell the world the number of ALS diagnosis is increasing across every race and gender. Please help us end this horrific disease. Think of music. We have diversity in country, rock, hip-hop, and other most music genres. As a result, we have great music across the board. If clinical research had a diverse representation, ALS clinical research could possibly provide a broader therapeutic treatment population. Much like music provides. The reauthorization of the act for ALS is critical because the research efforts can continue without interruption. If it is not reauthorized, it would be like a new beginning for ALS research.

Lorri Carey 59:31

So important. Yeah, and I'll put a link in the show notes so people can read more about what they can do to support that act for ALS. Thank you, Randy. Okay, Will, what are you trying to tell us?

SPEAKER_04 59:45

I'm trying to tell you that ALS may be terminal, but it's not the end of purpose. As a man of color, you know that's for 20 years. I wonder what I understand this. My body is weakening but my faith is stronger than ever. My body is not measured by my mobility. You're not pity us, walk walk with us. Fight with with us and see us see us for who we are.

Lorri Carey 1:00:27

Yeah, yeah. Thank you, Will. I appreciate that. Okay, Melanie, what are you dying to tell us?

SPEAKER_00 1:00:36

Melody's words. I'm dying to tell you that my life is full, and I invite you to journey with me.

Lorri Carey 1:00:45

Perfect. Thank you. Thank you, Melanie and Frank. Thanks for being her voice today. I appreciate you. Melanie, was there anything else that you wanted to add? No. Oh, right, you're sweet. Okay. I just can't say thank you enough for what you're all doing for the many shades of ALS community and our general ALS community as a whole. So I appreciate you all and your willingness to be here. So nice to meet you all. Thank you, Lori. Yeah.

SPEAKER_05 1:01:21

Thank you, Lori.

SPEAKER_06 1:01:22

Thank you, Lori.

Lorri Carey 1:01:23

Have a great weekend, you all.

SPEAKER_05 1:01:25

Okay. Thank you, Lori. All right.

Lorri Carey 1:01:28

Bye-bye. Thank

Links, Awareness, And Closing

Lorri Carey 1:01:33

you again, Bernardine, Perfecto, Randy, Melanie, Steven, and Will. I appreciate you all being here. And for everything you're doing in ALS Land as far as many shades of ALS and beyond. So thank you again. And to my listeners, I will put links in the show notes where you can get connected to my guests. And if you want to learn more about the many shades of ALS, I will put a link directly to that. But it is a community team within I Am ALS. So if you go to their website, imals.org, type in many shades of AOS, it'll take you to their page. And if you are moved to share their mission, feel free to pass along this episode. It's crazy after all these years that there still is an overall misconception about who gets ALS. For those people that aren't too familiar with ALS, they automatically think of Lou Gehring or they think of an older white man who is getting this disease. And that is true, but not the only demographic. It's really good for people to know that ALS can target anyone, especially people who are having symptoms and are being discounted by their doctor because of the color of their skin or their age. And it's really good knowledge for that person to know that it can be a possibility and to be able to advocate for themselves. Hey, if you're new, I am pretty much everywhere on social media. So feel free to follow at I'm Dying to Tell You podcast and see who's coming up, what's coming up next, and just be a part of this very special community. Until next time, know you are loved. And I'm alone. Thanks for listening.

Christian Carey 1:04:30

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