AUGUSTA, Ga. (WJBF) – This week The Means Report turns its focus to Mitochondrial Disease. About 20,000 Americans are diagnosed with it each year. One of those patients is Patti Ashmore, and she sat down with Brad Means to share her story.
Brad Means: Patti, it was no small chore for you to just get here today, so thanks for doing that.
Patti Ashmore: Thank you for having me.
Brad Means: How do you feel, how’s your energy level today?
Patti Ashmore: Well, it kinda bounces around a lot, and, as well as my breathing.
Brad Means: In the moment, are you okay?
Patti Ashmore: I’m comfortable.
Brad Means: Yeah, the reason I led with a question about energy is because that’s the whole deal with mitochondrial disease, is it takes the energy-producing things in your cells and makes them not work. And so you can’t do much of anything, it goes to your organ function, your overall ability to live a daily life, and so when that energy’s not there, great things don’t happen. When did you first find out you had this?
Patti Ashmore: Well, in 2013, I started, with, I was a registered nurse, or am a registered nurse, and, continue to be, but I’m not a practicing nurse, but I was a nurse, and I would start noticing my foot drop with my left foot as I was walking in the halls. And I started a little bit of dizziness, well, not dizziness, but a little bit of leaning towards one side or the other, as I was walking the halls. And that was in the ’13, and then in 2014, my fatigue got worse, and my breathing was starting to get a little impacted but mainly my left side, my left leg, my left arm, would just be really, sometimes it’d be more of a constant pain and then sometimes it’d be just be a short pain, it’s just kind of hard to know. And then it’s almost like instead of good days and bad days, you have good moments and bad moments in every day. So, that goes with fatigue, and with the pain itself. So, really ’13.
Brad Means: It’s not easy to diagnose. Did it take a while for doctors to figure out what was wrong with you?
Patti Ashmore: It did, it did. At first, I think they thought I was crazy. But unfortunately, that’s what a lot of people who have this disease go through, really. I’m being serious. So I had a muscle biopsy in 2015, here in Augusta, Georgia, And that showed that I had nonspecific myopathy it just showed that I did not have an inflammatory type myopathy. And then my physician, my neurologist said he wanted more information, and I agreed. He wouldn’t get to the root of the cause, and so I went up to Duke and saw a doctor there, a neurologist there, and they scheduled another biopsy. And I had another muscle biopsy, deep muscle biopsy. First one was in my left thigh, second one was in my left upper arm. And that one showed that I had a metabolic myopathy. It kept getting closer and closer. So the day we came back from vacation in 2016 was when I got the news, I picked up the phone, phone was ringing, answered it, and it was my daughter from Duke saying that she had gotten permission from me earlier to send the tissues to Columbia Medical University in New York, so in New York, they were able to make the diagnosis.
Brad Means: Has your condition worsened, stayed the same, gotten better, since 2013?
Patti Ashmore: It definitely worsened. In ’13, shortness of breath, I said, shortness of breath really didn’t kick in until ’15. 2015, 2016, things were just not right, but didn’t have that diagnosis. And then once I got the diagnosis in June or July of ’16, that was when, again there’s no treatment, no cure, but at least, I was able to have a name to what I had.
Brad Means: What in the world, Patti, did your parents have this? It’s genetic, it can be inherited. Anybody else have this in your family?
Patti Ashmore: No, sir, I have two daughters, they don’t have it, Mom and Dad’s healthy. So they say that at some point, they will probably find the genetic mutation to everybody who has mitochondrial myopathy, to my understanding. But, at this point, my genetic testing did not show anything.
Brad Means: So what’s the day-to-day routine for you as far as getting relief, getting some sort of comfort? There’s no cure, there’s no treatment. What are you taking or doing to make your life manageable?
Patti Ashmore: Well, the biggest thing is muscle spasms. Muscle spasms and the pain, and obviously the breathing. And I’m retaining a lot of CO2. So basically, some days I get up in the morning, and I feel pretty good and I take a shower. And then I crash for about two hours. By crashing, I mean, sitting in a recliner just trying to get myself back together. And then, usually about one o’clock, I’m dressed, ready for the day. But this is somebody who used to get up at 3:30 or 4:30 in the morning and train for a triathlon.
Brad Means: Triathlons?
Patti Ashmore: Mm-hmm, so big change in my lifestyle. Big change.
Brad Means: Patti, it’s mainly impacted, as you mentioned before, we went on the air, the left side of your body. So does that mean the right side of your body feels good, feels normal? Are there parts of your body that feel like the old Patti?
Patti Ashmore: My right arm does, my right hand does for the most part. My right leg is now probably 50% involved, compared to my left side. So around the house, when I get up in the mornings around the house, I’ll use a cane, a four-prong cane. During the middle of the night, my husband usually is having to turn me over, and when I wake him up to get me turned over ’cause I don’t, anyway, can’t get up to parts of the bed to turn over And then when I get out of the bed I use the walker to get to the restroom in the mornings. So, I mean, anywhere from single cane to a four-prong cane, I use my walker to a motorized chair. So it’s just kind of a–
Brad Means: Listen, this mitochondrial myopathy has apparently attacked your body but not your spirit. You’ve gone to the highest halls of power in our nation’s capital, trying to get somebody to do something about this disease. What can you tell us about what’s being done and what sort of efforts are being made to focus attention on this?
Patti Ashmore: Well, the biggest thing is, as you said, the Capitol, went to the United Mitochondrial Foundation Symposium, which this year was in Washington, D.C. And it was called Day on the Hill, which was that Thursday, to go to the Capitol, met with Rick Allen, our congressman. The senators had some representatives sitting in for them, they were out of town. But the big thing is Congress has done what they can do, and we’re waiting on another senator to sign off on a bill. And the bill is one that’s going to be able to allow folks, well, number one, allow more clinical trials to be done. We’re really trying to focus on getting some clinical trials there’s just so little that’s been done, or that I’m aware of, that’s been done. Also, to make the medication, right now, as you said, there is no cure, we’re treating symptoms, shortness of breath, I own a non-invasive ventilator at night with three liters of oxygen pipe in that. And then I have oxygen, even with me today, portable oxygen, when I need to go on it, the biggest thing is the CO2 retention. And the last several procedures I’ve had, I’ve had to do fully awake. An endoscopy fully awake, I mean, I’m basically feeling like I’m being intubated awake because my O2 stats will drop in the 80s. But back to the Capitol. We’re trying to get the Senate to pass a bill that will allow folks to get what we call the mitochondrial cocktail, which is lipoic acid, quinidine, and coenzyme Q10 at no cost, because right now–
Brad Means: How much is that?
Patti Ashmore: It runs about $40 a month for all three medicines if you get them from Amazon.com.
Brad Means: Are you taking it now?
Patti Ashmore: Yes.
Brad Means: And what kind of relief does it provide?
Patti Ashmore: Great.
Brad Means: It is? No, I mean really, does it help you?
Patti Ashmore: Well, I mean it’s like, I guess the question is, would I be worse without it, would be the question. ‘Cause I don’t know, I take it as my daughter has prescribed and more organs are affected now, so is it because of this debilitating chronic illness, or is it because they haven’t found the right thing, I don’t know.
Brad Means: Listen, before I get the doctors in here to talk about what they’re doing, what can we do to help you? It sounds likes something we need to hit our lawmakers up about. Congressman Allen and others say, look, please push this legislation through, so these folks can have their medications, right?
Patti Ashmore: Absolutely. And it’s called the HR2501 Bill.
Brad Means: HR2501?
Patti Ashmore: HR2501 Bill that we’re trying to get the senators, we’ve got Senator Casey, he’s from Pennsylvania, he’s already signed on, we just need one more senator to sign on, and then we can move forward with more research, more clinical trials, and that’s just a really big thing right now, so yes.
Brad Means: Well, my hope is that you get relief soon. You are a wonderful ambassador for this disease that you never wanted to be an ambassador for. But life dealt it to you, Patti, and you’re handling it with incredible bravery and poise.
Patti Ashmore: Well, thank you, I’ve been very blessed, as being an RN for 30 years, I couldn’t give it up, so I had to rechannel that to something else, so I did research in my field of nursing, which was wound and ostomy care, and then, beginning of this year, I said, we need research in my own field, so that’s when I jumped in, and Margaret Moore, the president of the United Mitochondrial Foundation, she quickly, I’ve been co-editing letters, co-editing articles, and doing content validation and you ask me about my arm, my right arm–
Brad Means: Yeah, is it pretty good?
Patti Ashmore: Yeah, it’s pretty good, I love to, I’ve got my Lydia Ladies, that have cancer, I write them to encourage them, and of course I’m the one that’s being encouraged, 20 times-fold. And then, I also paint rocks, I love painting rocks, they’re nothing like the rocks you see on the Internet and stuff, but I love painting rocks, my family members, my daughters, my husband, will take them and put ’em out places, ’cause I can’t drive, haven’t never drived for four years, so.
Brad Means: Well, listen, please be well as best as you can and we’ll handle the rest, trying to draw attention to mitochondrial disease, mitochondrial myopathy, in Patti’s case. Patti Ashmore, thank you for your time.
Patti Ashmore: Thank you very much.
Brad Means: Absolutely.