S11E14: VIVISTEM & NEW BEGINNINGS ( advocate, Brenda Cummings)

Hello, my beautiful stroke survivors. How are you? I'm Karina, the host and creator behind Stroke Surviving the odds of the podcast. If you're seeing this, chances are you're watching it on YouTube. Make sure that you ring the bell. That way you subscribe, you don't miss any of our new episode with our amazing guests.

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This is what we do here and I promise that when I was going to bring some guest experts, they were going to give you new, new open ways for recovering both emotionally and physically. Well, today is not any different. I would like to introduce today's guest. She's a recurring guest, but today she comes here with intention and with a purpose. We've been trying to get each other to hook up and finally she is here.

Now Brenda is from Florida. Lucky her. Check this out, two kids, 6 grandkids, 2 great grandkids. I mean look at this woman. She's like wow. OK, Brenda is a two time stroke survivor so she's going to give you a brief of her story. But today, she's here to educate and advocate for this procedure that is called Vivista.

Some of you might have heard about it. Some of you are like me and are brand new to this. I never knew it existed. So what I'm going to do is I'm going to give the floor to Brenda Cummings, and the floor is yours. Thank you again for inviting me. You know, I love your shows. I think that you bring a lot of information to the table. And when you asked me the first time to come on, I was thrilled. And when you invited me the second time was again, it was just amazing.

I am Brenda Cummings and I've survived 2 strokes and I, I'm just so thankful to be here because so many times when people have strokes, they don't survive or they're paralyzed from the neck down. And I saw, I've seen that when I've gone to rehab and I feel so blessed and so glad that I'm not that person. And I try and I try each and every day. I have a model.

If I just see 1% difference every single day, I'm doing good. 1% difference is all I need and I feel good about that 1% difference. I had a procedure that was called Viva Stem. And let me tell you a little bit background about Viva STEM. Viva STEM is for people who have had ischemic strokes and what they do is they put a little mechanic machine. Hold on.

It's both sides. Hold on. Brenda, hold on. I just want to reiterate this is for people that have had ischemic stroke. OK. Any of that's what you just said? I'm repeating what you said. I'm sorry, I want to make. Certain people know that that's it. So people like me that had to bring STEM stroke or people that that had an hemorrhagic stroke, is it OK to for that too or only?

Only right now they're going to the FDA, but I'm not supposed to like advertise that. But just between you and I, they have already started, but it's going to take them two to three years before they can get approval for hemorrhagic strokes. But they are going to the FDA for that. So if if you want to go back over, I'm sorry, I should have mentioned that it is just for hemorrhagic strokes right now. Ischemic stroke.

I mean, I'm sorry, ischemic strokes, not hemorrhagic. Strokes. I'll be quiet on that one, OK? You know you don't have to. You don't have to. So this is the Viva stem. This I have a Viva stem implant and let me tell you about the Viva Stem implant. Viva stem implants are for people who have had ischemic strokes. I had two migrainous ischemic strokes and I had the Viva stem implant implanted in my chest.

And this is my star here. We can't. Oh, sorry about that. But the camera lower, yeah. OK. OK. This is my star. And they go up to the vagus nerve and wrap wires around the vagus nerve. But what happens then is that the vagus nerve sends signals to your arm in your hand to help it move. Some people get there, you know, get movement more in their arm or in their hand first. My arm has been responding really good. My fingers have been responding some, but my arm has been responding really good.

I can put my hand around a glass that I couldn't hold before and unscrew it with my left hand and hold it with my right hand. So I'm extremely happy about that. I learned how to write after three weeks, how to write with my right hand, and I hadn't been writing since October the 19th, 2019. So I was so excited about that.

I started crying because that was something to be excited about. But once again, the size of it is small. If you look, it's like earbuds reflect. Just put it where the camera is 'cause I want to see it. So could it be? Is it about the size of a pacemaker? Yes, but I think it's a little smaller.

It's a little smaller. OK. And the way it works is that it needs to be activated now when you're taking your OT and you have to take now this, you have to be dedicated. Let me just say this, first of all, a neurologist needs to recommend that you have neurosurgery for the Viva stem. The doctor sends you to a neurologist, you know, neurologist gives you a recommendation to go to the neuro neuroscience Dr. and he does the Viva stem. One thing I will say about my doctor, Doctor Flutie, if he feels like you're not going to be enthusiastic, you're not going to work, he doesn't want to do the surgery because he feels like it's so many people out there who deserve to have the surgery.

Who want to try, who want to work and want to make a difference, that's who he wants to help. He doesn't want someone that's just going to go that to let's say Pete OT three times a week and that's it. They don't Rob, they don't use the magnet. And let me show you what the magnet is. This is the magnet. And when you're not at OT, what you do is you take the magnet and you, you rub it across your chest where the where you saw my incision and you do it like 1 Mississippi, 2 Mississippi, 3 Mississippi, one Mississippi, 3 Mississippi, 3 Mississippi. That's how you do it to activate it. Then it's activated for 30 minutes. So like if you want to go in the kitchen and try to cook or put things up, it assist you.

It helps you like you get, I'm not going to say a charge for the just like it helps you move more. What happens is that every movement that you attempt to do and you start doing it, your brain remembers it and it remembers it in a way that when you go to do it the next time, it's just a little bit easier the next time and a little bit easier. It makes it better for for you when you're attempting to do anything, not everything is going to work. It's just like what when you first had the stroke and you started to regain movement.

It's the same way you have to regain movement. So but you have to practice. That's the thing. You can't only do this just today's that you're there for 90 minutes because you have to be dedicated to going to therapy for 90 minutes three times a week. Telling you guys, I have to tell you guys, I have my podcast, my pod page on Facebook at stroke Surviving the odds, the podcast on Facebook, Brenda is constantly posting.

Now I understand why you are always showing us your workouts, because you want to maximize what's going on. Exactly, and a lot of people cannot pay for OT or PT, so I want them to see some things that they can do at home for themselves. I love that now in the states is there is there fees for that live a stem?

How does that work? Can you talk about insurance? Yes, I can talk about that. The insurance I have Medicare and Medicaid. My, my Medicare paid for most of it and then the medic 80% and then the Medicaid paid for the 20%. So it was taken care of. I didn't have to pay anything out of pocket and it was worth it. My, I mean, when I say that I was the first person, that grassland, which is where I go for my OT had they had to Vivastim, they had to learn everything. And Rachel was one of the people from Vivastim who brought the, the computer for them to use, taught them how to use it. And I guess I was the first one there that they had in one sense, just not using the term Guinea pig. I was the first person they had

and they loved that. They loved learning new things. I love seeing new things. I was feeling better about myself. It it reminds me a little bit of RoboCop. Hold on. Yes, yes. When I wear my brace, my leg brace, it's, I forget the name, but it's the one that you tie around your calf and it it ties on your shoe.

OK, OK. When I wear it, Brenda, I feel like a badass. I used to be. At the beginning I was like, no, no, like I was hiding it with long pants, long dresses. Now it's like, take out my leg. I love it. Exactly, exactly. You feel good about making accomplishments. Yes, yes, it's about being comfortable 'cause I'm sure that for some people having a scar there is bothersome.

It does not bother me. It is the battle star that I won. Thank God for that. And guess why I say I won because I had the opportunity to try Vivis them I made-up in my mind, what do I have to lose? What do I have to lose at the time, and I'm going to just show you if I can. I could not put my arm to my stomach. It would not go that high.

Now I can put it up to here. I can put it here to where my mouth is. Wow, wow, wow, wow. Not do that once again to where my mouth is and it was coming up to maybe where and it's not showing like it was down here. It's where it was and it's my old videos. My first video was showing you, telling you the day before I had surgery. I was telling you my story and telling you about Viva Stem and how glad I was to have it because I couldn't lift up, you know, my arm and all.

And that's where it starts. It starts with being constant. It starts in believing in yourself. With me, I, I pray and I just have faith and I keep on moving. I do not let anything return me and I keep negative people from being around me. You have to do that and it's and sometimes. It hurts. So you talk very fast and, and, and.

I'm trying not to write. I'm trying to remember and and and listen 'cause I'm really interested in this. How long is the convalescence? It is 2 weeks and then you start working out after two weeks so you he doesn't want you lifting. I believe it's over 5 lbs with a hand because this is on your left side. So on your left side you can't live any more than 5 lbs. But when I tell you, you go in for the OT for it, you work 90 minutes a day.

You have to devote 90 minutes a day three times a week. And when you go in there, they work you out. I mean they work you out. You have to make. Sure, Brenda. So I love that you said for people that don't have occupational therapy or physiotherapy, the visit them is an outlet. It is another opportunity for them to.

But if if someone in the states doesn't have Medicare for OT, how can they get? What they can do is check with their insurance. They could check what insurance they have because a lot of insurance will cover it because of course it gives you more mobility. So they're looking for that, you know, for you to have more mobility so you can perform some of the activities that you did before the stroke. So you just have to check with your insurance also too. You can always, and I tell people this, always check and see if their grants use GoFundMe. If they have to do what you can to help yourself. We have to do that.

We honestly have to do that. I don't sit around trying to have a pity party. What I try to do is get information. You bring a very good fact, a good point. You said even a GoFundMe if you have to. And Brenda, what I'm noticing, and I'm sure you noticed it too. I know you had some health issues other other than that other issues.

And but I'm sure that when you were scrolling in our group, in all the groups that we're part of, you noticed that a lot of people feel like giving up, feel like a stroke is a death, is a death sentence, when in fact it's not. So what do you have to say about that? Like I know you personally how strong you are, but to a person that's not as strong as you? My first of all, I'm going to say this, my strength and my faith comes from God.

Secondly of all, I'm never I, I've never been a person to just say I'm just going to just lay back and take this. I'm going to fight. I want to be able to say I'm I'm going to fight to the bitter end when we have exercise with OT and they say, OK, I want you to do 15 of this. I'm pushing to do 20. The reason why I like to push myself and push myself and push myself.

When you sit up, you start affecting your brain, your mind when it overcomes you with negative thoughts that you can't do this, you can't do that. You don't say. Can't you say at this time I'm not able to do this? What did? All. Right, This is why me and Brenda, we click, we mesh well together because we have the same same mentality if you will.

OK, this is how life is right now. Acceptance doesn't mean you're giving up. It does not mean you're giving in. It means right now it is what it is. You have to make the very best of it. You can't expect to click your fingers. What Brenda said is when they tell her to do 15, she does 20. I was like that 20 years ago. I mean, I'm, I'm lucky that I worked out right away and I did not have the wisdom and, and I'm capable now you're making me feel really, really lucky because Brenda, when I stopped having long hair, I couldn't tie my hair anymore, right? And now you just told you just made me feel great and and and grateful and blessed that I can even do this. You're doing a great job.

And the thing of it is, it's a mind thing. It's manifestation, it's mindset. Let me tell you something. There was a guy and that was on on in my group, stroke survivors, positive and positive out. He didn't at the time he did not have insurance and things. That man got up every single day and exercise. He moved, he walks normal now, he uses his hands normal now and he had a pretty bad stroke.

But what he didn't do, he didn't sit down every single day. He was up doing something every single day he was doing something. You have to do something, some type of movement with your body because when you sit there, it's going to stay down that you have to rewire your brain and a part of doing that is getting up and doing something.

Are you going to get it right away? Most people don't or you don't, but you got to keep on trying. You can't give up. Do you know that my the stroke that I had the first time, the stroke, because it's not my stroke, it's the stroke, The stroke that I had the first time was in October 19th, 2019. But look at this, that's nothing. That's nothing but God, I'm thankful for this because guess what?

I couldn't lift it up at all. I couldn't hold a pen at all. And I wasn't going to sit back and just wither in the chair. I wasn't going to be sitting back and put in a nursing home or something like that. I wanted to get up and go. And I don't care who looks at me. I don't care who stares at me. I don't care if they look at my cane. I don't care if they look at my.

Sometimes I have a knee brace or Swedish knee, a cage that I wear. Look at it. Guess what? I'm walking. You know, OK, you see, you tell you talk so fast. You're you're you're such a great motivator. And thank. You. I I love motivating people, but sometimes I need people like you to motivate me. No, you, you are so good.

You are so good. And Bob, you are so good. Thank you. I just want to go back because I want to know your thoughts when you talked about the GoFundMe. A lot of people see shame behind the GoFundMe. Now I'm just like, I'm not proud of myself but I think that if I was to do a GoFundMe for me my the people in my family or my boyfriend would say I was just giving the fuck money.

This is what I would say if you have a friend or a family member and knows your needs that that that friend or family member start to go fund me. Just just tell them. They can tell the truth. Just tell the truth. I tell anyone, just tell the truth. I want to do something for one of my friends. They want to have a surgery. The surgery cost, this amount, this is the doctor. Give all the information, not where it sounds halfway or suspicious.

You want to give them date time. This is the doctor. They can verify the cost and it's going directly to the hospital. You know, that's what you do instead of like what's coming here, coming there. This amount goes to the hospital. This is what it's for. And for her healing afterwards, she has to have OT. And this is how much the OT cost. It can go directly to this OT center. That way they're not feeling like in, in this name, That way they're not feeling like, oh, they're just giving you money. They're not giving it to you.

They're giving it to the doctor. They're giving it to the hospital, they're giving it to the OT center. They're giving it to you who has to take care of you. So that way you can do it. A lot of people think that the GoFundMe is like charity and they'll say I'm not accepting charity. I don't think it's charity.

I think it's awesome and it if I needed to do it, I would like I would do it. But a lot of people feel shame around it and feel like it's charity and their ego takes over. But for Vegas them, which is pricey still because it's relatively new, right? How? Do you, if I'm not mistaken, it's been, it's been around, let me just tell you this, it's been around for children who have had epilepsy.

So they've been using it for years with epilepsy. But if I'm not mistaken, it's been around 3 or 4 years with, with the isthemic stroke, ischemic strokes. But the thing of it is it is new and they've been getting awards. That's the whole thing. This is just not something to play with. They get awards from from different places, but it but it's innovation and that's good.

I, I, I mean, today you gave so much information. I'm going to make sure that I post the link to Vivistam that you sent me directly. Now, one last question that doesn't have to do with that your group on Facebook is stroke survivor Positive in, positive out. Can you tell us where you got the name?

I was thinking about that. I was a stroke survivor and I was thinking about what I wanted. I wanted people to give me positive information. I wanted that in my brain. I want something positive in my brain. That's what's going to come out, something positive. When you put negative thoughts in your brain, when you put negative thoughts around you or have negative people around you, that's what you're going to get.

So what I want in is what I want to come out and that's what it is. I want positive positive in so I can bring you positive out. If you guys love the vibe of Brenda, and I know most of you are going to say yes, how do I reach this girl? I'm also going to be posting the link to her group so you can ask to join and you can talk in that case to Brenda directly. Again, I'm going to be posting the Vivistam. Anything that has to do with Vivistam. Yes, she is an educator and an advocate, but Brenda is a stroke survivor and she's working real flipping hard. OK, So we are going to give her a break on that, but I know that she's there if you need her.

Brenda. I have, I have a previous engagement, but you know what, you are welcome to come anytime. Actually, I think that we are going to be doing a live together pretty soon. Anytime I just I love your shows and the one thing about you're very informative and that's what people need. They need information.

They need to take the information down and use it. Don't just write it down or put it down in your phone. Use it. It's all about what you want to do for yourself. Positive in, positive out. Do it. With joy, happiness, serenity, confidence. Out. Out with negativity, sorrow, pain, sadness, toxicity.

Exactly. Thank you so much. Thank you so much for blessing us with your presidents, guys, This has been Brenda Cummings. Cummings with the nest and stroke surviving the odds of the podcast. Make sure again, I'm not going to go through all the the shebang. You know what to do and I love you immensely. Love you too.

Thank you so much again and I can't wait to come back. All right, love, bye. Bye bye.

S11E14: VIVISTEM & NEW BEGINNINGS ( advocate, Brenda Cummings)

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