MS: Keep Moving

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"I just don't stop."

Multiple Sclerosis Exercise Tecfidera

Story Transcript

My name's Leesha Stanford and I live in New Jersey. And, I have multiple sclerosis, and for anyone who doesn't know what that is, the basic of it is that your immune system attacks the myelin sheath around your nerves. And so being that your nerves are exposed, it can cause nerve damage and overtime it can become debilitating. Right now. I mean, I hope this stays, but right now I can still walk. I still have full use of my limbs. I did hear that multiple sclerosis, and I've also heard that some doctors and I’ve read it. Multiple sclerosis (MS) is different for different people. My personal story is that I actually started having symptoms around, say 2009, and I was diagnosed, officially diagnosed years later, in about 2017 was my official diagnosis. I lost my mother in 2016 and I noticed that the stress from that was really hard on me, hard on my body.

Now, I had always heard about stress and multiple sclerosis and how it can aggravate things. Well, it definitely did for me. My vision started to get weird. I won't say bad, but just strange. I started to have problems with nearsightedness, which I know that can go south when you reach your maybe late thirties, early forties. But this was a little before that for me, so I was like, I was kind of, I was on the cusp, but I really didn't think I would have vision changes. And I did. I didn't have the same vision changes as the onset of my symptoms. But I did have vision changes. I was still able to exercise, but I noticed that certain movements that I would try to perform like to give you an example, I used to do things like kickboxing. I didn't really run, but I incorporated some running style aerobics into my routine, like running in place, jogging with the high step things like that, and I noticed I couldn't do that anymore. And, when I was officially diagnosed, the reason why I keep saying officially diagnosed, let me just go back, is because my doctor kept telling me that I had a vitamin deficiency. He kept saying that, Oh, well, these symptoms that you're having is probably a result of you being deficient in vitamins. Well, I knew that wasn't sure. And you have to know your truth. I knew for me that was not true. I eat every vegetable in the book. I love fruit. I love you know everything. All meats, like I eat everything. And I just knew that wasn't sure. I take my multivitamins.

But for me, my personal MS journey had to do with my limbs. I wasn't able to do the high step anymore without falling over, things like that I knew had nothing to do with vitamins. And I still went to the blood tests. I did everything he told me to do, and eventually, I have to give this to the Lord, for anyone who is religious, you’ll understand that doctor that kept telling me that I was vitamin deficient, he left. He went. He left the practice completely and went back home to Pennsylvania or somewhere. So I was left without him and had a new doctor. My new doctor says, Go see your neurologist. Get some more blood work done. Let's get to the bottom of this. Long story short, had the blood work done, everything looked good and they said, Let's do a MRI. Got the MRI. MRI said, Oh, you have the, uh, the look in your brain of having MS. And so, Okay, so then the neurologist went deeper, he said, No, you definitely have it. He said, You know, your brain is pretty much lit up and darkened in all the right places that it would be for MS. That's what you have. And that's when I received my official diagnosis. When I saw a neurologist. I want to urge people to not only know your truth, but also know who you should see. Now you would think that people would know to see a neurologist, but a lot of people don't know who they should see. Some people are scared of a doctor. Don't be scared of a doctor and don't ever self-diagnose.

When I tried to self-diagnose myself, it was so scary, and it was a bunch of stuff I did not have, and my mother was a nurse practitioner, but she was cardiac specialty. We, you know, we did all this research together, and then she passed away and I didn't know what I had when she died. Then a year later, I find out, Oh my God, I have MS. And it was just, it made so much sense at that point, because there were so many things that I could not do anymore. You know, with the working out and you know, there's a special way I have to work out now, like I have to use a stationary bike. It cannot be high up. I have really bad depth perception. None of this was a problem before. None of it. I can still walk. I can still climb steps. I don't have a problem with that. But going down steps, I have to hold onto the rail, even though I can go down the steps and use my limbs. It's very difficult with the depth perception problems to go down the steps quickly. I never had that problem before, but I do now. I can't skip steps going up the steps like I used to be able to. Going down curbs, I have to really make sure that I calculate my steps like I have to make sure that I go down a curb outside, slowly. You know, things like that are a problem for me. My hands, the palms of my hands and a little bit on the soles of my feet are numb, but I can still feel, I can feel pain and I could feel pinching and things like that. But it's a very hard situation to explain. I can still feel things, but not like before if I go to pick up something light in my fall out of my hand because I might easily just forget I'm holding something, if I'm not actively looking at it, things like that are still a problem for me, but I take Tecfidera. That's what I was prescribed by my doctor when I first heard that I was diagnosed, and I still take it now. It's a pill. They do have shots.

They have things that they could give you that are a lot like chemo treatments. There's all sorts of things for MS now. I have relapsing and remitting. Now I know that they have, there’s the MS that you know it's not relapsing remitting it's just MS that completely takes you down. You know, you might be in a wheelchair in a year. For me, I don't know what it's going to be with the advancements in medicine. I don't know what's going to happen, you know, next month. But I have faith that the medicine will get better and I won't be on Tecfidera forever. Maybe I'll get on another medication next year that might just be, you know, maybe I only have to take it twice a year or maybe I'll just get a shot a year. I don't know. But right now I take Tecfidera. I take 240 milligrams and it has not stopped anything. But it stopped everything in its tracks. I guess you can say I have a very, well basically every time I get an MRI now, it's stable. I don't have any flare ups. I don't have anything that's progressing. Everything is pretty much, it has stopped progressing, so I won't ever get rid of MS, as far as I know. But I know the progression of it has stopped.

The other day I tried to run after a ball and it was really funny because I was trying to run after it. And even though I couldn't really run, I noticed that I had a little more pep in my step than normal and, well normal now, my new normal. And it just felt good to be able to move faster. But I really have to calculate my steps, and it's really easy for me to fall and if I go to fall, I'm not gonna be able to correct it. Before I was very sure-footed. Not so much now. So and I'm sure that all comes from the depth perception. But, I've been in one car accident that I have to say was my fault. That was about two years ago now, and you know, so shortly after I was diagnosed and it was, it was ... no one was injured, but it was very startling. And I could guess you say the car was injured? The car was actually totaled. At least mine was and that, I'm pretty sure was a result of my new condition.

But, I just you know, I take care of an elderly woman during the day. I still have a job. Disability denied me, my memory is not so great. I'm a funeral director, so I don't go to make funeral arrangements with a family, unless I have someone with me that can, that can write for me, because writing is a little weird being that my hands have that numbing sensation. Writing gets a little strange. Before I used to have very neat handwriting, but now my handwriting is kind of sloppy. People, other people say, Oh it looks fine and I'm like, you're just being nice because I know what it used to look like. But it's just it's definitely, it's just a different experience now and it's really humbling. And I like taking care of the woman that I take care of, simply because I wouldn't want to be alone. And I know what this condition can bring me and even though I hope that doesn't happen, I don't know what's gonna happen. I'm 43 now, and I don't know what will happen like I said next month, I have no clue. I hope that I'm not ever in a wheelchair. I hope I'll always have use of my limbs, but I don't know that I will, and I wouldn't want to be alone. So I hope that I can, you know, help people now, not just her, but just people in general, so that I could just keep going, keep moving myself, and I just don't stop. I feel like if I stop, then I'm just gonna stop.

I don't sit too long, like I might, if I sit down for an hour, like I don't even go see movies like I used to because I might get a little bit stiff. So I try to walk as much as possible and just keep moving, keep doing my regular thing. You know, laundry, cleaning, working. Just keep doing the same stuff. Just don't stop. I do understand that people who have multiple sclerosis that's different, that's just debilitating right off the bat, I know that they may not have that same mobility, so theirs might be a bit different. But anyone for relapsing and remitting? Yes. Don't stop moving. The other person that I know that has MS. It's actually really freaky because we share a sister. They have the same father. But me and my sister have the same mother. My mother was married twice, so her sister has MS too, and she was diagnosed before me, several years before I was. And, she's only a year older than me, and I can't wear heels again because of the depth perception, I'll fall over. I've tried it. I love heels. I used to wear heels all the time. But she wears heels, and when she was first diagnosed, she didn't wear them. And then, maybe I want a say, a year after her diagnosis, I saw her with them on. We were at a party together and I said, Oh my goodness, you have heels on. She's like, Yeah, I can't believe it. And she's like, You know what? Now this was her story. She said that she just didn't, she's like, I just wasn't gonna stop wearing them. I love my heels, and I just taught myself to keep wearing them. Now that's something she felt comfortable doing. I did not, but she felt comfortable, so it's more or less, whatever the person that's just diagnosed did before, keep doing it. Don't stop. So that's pretty much my MS story. I hope it helps someone.

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